I recently had the privilege to speak to parents and professionals in England, Scotland, and Ireland. In my trips abroad over the past five years, I have found parents and professionals to be increasingly interested in the diagnosis and treatment of ADHD. I realized on this trip, as on others, that the majority of parents I spoke to attending my lectures, appeared to have children with significant impairments, those with ADHD as well as multiple diagnoses. These parents spoke frustratingly about the expulsion of their children from school, failure with friends, and severe behavioral, emotional, and learning problems. I began to wonder if children abroad experienced a more virulent form of ADHD and comorbidity. Then I realized the process taking place was similar to the one I observed when I first entered clinical practice nearly thirty years ago. As a new condition becomes recognized and identified, families that come forward first are those with children experiencing the most severe impairments. It is the severity of the child’s problems and the accompanying frustration and helplessness parents experience that motivates them to seek out alternative answers to their questions. Thus, in these European countries, it is not surprising that the average person, and in fact, many educators and professionals, only observe, evaluate, and treat the most severely impaired children, leading them to perhaps believe that children with more moderate symptoms and less impairment may not be deserving of a diagnosis or help. Yet, it is clear that if children meet the current diagnostic criteria for ADHD, a consideration for impairment must be part of the diagnosis. If the diagnosis is made, the level of impairment is sufficient to warrant treatment.
In the United States, perhaps the pendulum has swung in the opposite direction. In some cases, it appears that children with some symptoms and some impairment may be given diagnoses and receive treatment leading to an increase in reported incidence statistics. Where is the line drawn? How severe must impairment be before treatments are prescribed? Is it possible for someone to meet the diagnostic threshold for ADHD, yet experience impairment of a mild variety that may not, in fact, require significant treatment? In this month’s article, I will offer my opinions about the issue of impairment in ADHD. As a non-physician frequently evaluating children with ADHD and significant comorbid medical and psychiatric problems, I will offer my opinion and the framework I provide physicians when they inquire about level of impairment required to decide upon medication treatment.
Prior to 1994, the diagnostic protocol for ADHD did not require that the level of impairment or severity be assessed prior to making the diagnosis. Thus, an individual could be provided with a diagnosis of ADHD based upon symptom report, yet experience mild impairment and few, if any, problems in every day life. However, the authors of the diagnostic manual (DSM-IV) recognized the risk of over-diagnosis with this model. Since 1994, level of impairment must be considered prior to providing a diagnosis. An individual must not only experience the symptoms of ADHD, but significant impairment in at least two major life domains. For children, this includes school, on the playground, and at home.
In the thousands of parents I have worked with, I have yet to meet a parent who responded positively when a diagnosis of ADHD was made and a discussion of medical treatment followed. I don’t believe any parent in their right mind would respond, “I’ve been waiting for you to make this diagnosis and suggest that my child be placed on this regulated, controversial medication.” Yet, medicine is effective for ADHD. In this case, effectiveness is defined as a reduction of symptoms leading to relief of impairment. That is, when children with significant problems stemming from ADHD respond positively to medication, the pattern of impulsive, inattentive, and hyperactive symptoms reduces in severity, leading to improved functioning at home, school, and on the playground. Yet, it also appears to be the case that symptom relief does not equate to changing long-term outcome. While symptom relief is an important reason for treating children with ADHD, it does not appear that children with ADHD who take medicine grow up to be more functional, happier or healthier than children with ADHD who do not take medication. The medicine is primarily a treatment to relieve symptoms. As I have written, however, in previous monthly columns, symptom relief “evens the playing field.” It allows children with ADHD to enter school, go out on the playground, and interact with their family members in normal ways. The benefits of medication should be assessed relative to the immediate relief of symptoms. As such, the determination for medication usage in children with ADHD, I believe, should be based on level of presenting impairment.
At present, there are few, if any, objective measures to evaluate impairment. I have increasingly begun using a subjective, one to ten scale, with ten equating to significant impairment. Once I’ve made a diagnosis of ADHD, I consider the child’s level of impairment along this scale. Keep in mind that a very low score doesn’t equate with normal functioning, since if a child didn’t experience some degree of significant impairment, I wouldn’t provide a diagnosis of ADHD according to current diagnostic criteria. In making my determination, I focus upon the child’s level of social interaction, academic functioning at school, in particular if the child has a learning disability, comorbid or cooccurring problems, such as depression, anxiety, and oppositional defiance, the child’s ability to participate in organized social activities such as sports, and finally, the child’s relationship with parents and siblings. When children receive a rating of seven to ten, I strongly urge parents to speak to their physician about including a trial of medication as the treatment plan is set in place. When I provide a rating of four to six, we discuss medication as a likely option, but not necessarily a first step. In my experience, however, children with this mid-level of impairment will be tried on medication at some point, and usually benefit. Finally, if a child receives an impairment rating of 3 or less, we begin with psychosocial intervention, including setting up a behavior management program at home, and advocating for interventions within the classroom. Children with this lower level of impairment usually are not experiencing significant social problems. I also explain to parents that ADHD as an impairing condition is catalytic. That is, if children experience other problems, such as learning disability, mood or anxiety disorders, it is likely that untreated ADHD will act to worsen those conditions. Thus, if ADHD is present, impairment secondary to the condition should be evaluated and the condition should be treated immediately. It has been my experience with children experiencing significant cooccurring problems, that treatment of ADHD usually lessens the severity of these other conditions. For example, research has demonstrated that children with ADHD who are good medicine responders and also experience a learning disability, make significantly more progress from the special help they receive than those children who are poor responders. It is not the medicine improving their learning, but rather their increased capacity to sustain effort and focus in the face of frustration leading to accelerated progress.
I remind parents that I am the consultant and they are the case managers. To be good case managers, they must understand their child and see the world through his or her eyes. I believe it is important for professionals to possess and be capable of articulating a reasoned and reasonable system to determine when medication should be considered as a first line intervention for children with ADHD. I also utilize this system for children experiencing significant comorbid problems whose response to stimulants may be good, but because of additional impairments may, in fact, be candidates for consideration of a second medication. I try to help parents separate science from non-science, and ultimately from nonsense. I try to assist them to be confident consumers of the essential information necessary for them to make good choices for their children.
When parents are interested in learning more about the medications used to treat the emotional and behavioral problems in children, I have been referring them to Dr. Tim Wilen’s text, Straight Talk About Psychiatric Medications for Kids, (Guilford; 1998). I recently finished reading Dr. Larry Diller’s new book, Should I Medicate My Child, (Basic Books; 2002). This text provides parents with an excellent set of guidelines to make decisions about psychiatric medications for their children and an up to date overview of the medications currently being used.
