February 26, 2018
Attention-deficit/hyperactivity disorder (ADHD) affects 17 million children and adults in the United States, and is one of the most well-researched diagnoses in the global medical community. So why is it that ADHD is still so often misunderstood, underdiagnosed, and improperly treated? As a parent, what do you need to know?
Myth versus Fact
Let’s begin by busting a few myths surrounding ADHD. First of all, many people still do not believe that ADHD is real. They see it as an “American disorder” resulting from our hyper-fast lifestyle, or even worse, as a consequence of bad parenting. This could not be further from the truth. ADHD is recognized as a valid medical disorder by leading organizations around the world, including the U.S. Centers for Disease Control and Prevention (CDC), the National Institutes of Health, and the World Health Organization.
Thirty years of imaging shows that there are multiple differences in the ADHD brain versus the normal brain. Brain scans reveal dissimilarities in the size of brain areas, the activation of neuron circuits, and the density of dopamine receptors in deep brain locations. ADHD is found around the world in a diverse range of cultures, economies, societies, and educational systems – not only in the United States.
Many people believe that children will outgrow ADHD. Again, this is a myth. Studies following children with ADHD for up to 30 years indicate that 60 percent of children will continue to have impairing symptoms throughout adulthood. And sadly, in the largest U.S. study of psychiatric disorders in the general population, 75 percent of adults with ADHD were never diagnosed as children, and continue to suffer the negative consequences in their work and personal lives.
There appears to be little awareness regarding the severity of potential problems caused by ADHD. ADHD is a neurodevelopmental disorder characterized by a persistent pattern of inattention and/or hyperactivity and impulsivity that interferes with daily functioning and life’s achievements. Children with ADHD have higher rates of retention in grade level, high school, and college dropout; they also have increased emergency department visits, driving accidents, substance abuse, and criminal activity. It must also be noted that ADHD often coexists with other disorders. The 2007 National Survey of Children’s Health found that 33 percent of children with ADHD had one coexisting condition, another 16 percent had two, and an additional 18 percent had three or more. These conditions include learning disabilities, oppositional disorder, conduct disorder, anxiety, depression, and speech problems.
Some believe that medications are toxic and therapy doesn’t work. Again, decades of research repudiate these myths. Medications for ADHD are among the most effective treatments in all of medicine and psychotherapies have been proven effective in dozens of studies around the world. ADHD is, in fact, highly manageable with an individualized, multimodal treatment approach that can include behavioral interventions, training for parents, educational support, and medication. There is no quick fix. Today, as many as 17.5 percent of children diagnosed with ADHD are not receiving proper treatment.
Getting a Reliable Diagnosis
Alarmingly, the CDC estimates that 30 percent of children with ADHD have never been diagnosed at all. The underdiagnosis, as well as the misdiagnosis, of ADHD continue to be widely debated, fueled by varying estimates regarding prevalence and the complexity of diagnostic criteria. According to numbers reported by the leading science-based organizations, including the CDC, the rate of prevalence among school-age children in the U.S. is eight percent. Ongoing research indicates that rate may actually be higher. But there is no definitive physical test – for example, a blood test or an X-ray – to systematically evaluate a child who might have ADHD. The bottom line is, parents and teachers need to be more in tune with recognizing symptoms that might indicate ADHD, and clinicians need to be better trained in making an accurate diagnosis.
The classification system found in the Diagnostic and Statistical Manual, Fifth Edition (DSM-5), is the gold standard used by healthcare professionals when evaluating patients for ADHD. The DSM-5 lists three different presentations of ADHD – Predominantly Inattentive, Hyperactive-Impulsive, and Combined. The symptoms for each are summarized below. To be diagnosed, children should have six or more symptoms in the inattention category and/or the hyperactive/impulsive category, while adolescents age 17 and older and adults should have at least five symptoms present in one and/or the other category. The DSM-5 also requires professionals to determine the severity of the disorder as mild, moderate, or severe, as ADHD affects individuals to varying degrees.
ADHD Predominantly Inattentive Presentation
• Fails to give close attention to details or makes careless mistakes
• Has difficulty sustaining attention
• Does not appear to listen
• Struggles to follow through with instructions
• Has difficulty with organization
• Avoids or dislikes tasks requiring sustained mental effort
• Loses things
• Is easily distracted
• Is forgetful in daily activities
ADHD Predominantly Hyperactive-Impulsive Presentation
• Fidgets with hands or feet or squirms in chair
• Has difficulty remaining seated
• Runs about or climbs excessively
• Difficulty engaging in activities quietly
• Acts as if driven by a motor
• Talks excessively
• Blurts out answers before questions have been completed
• Difficulty waiting or taking turns; interrupts or intrudes upon others
ADHD Combined Presentation
• Meets the criteria for both inattention and hyperactive-impulsive ADHD presentations
• Symptoms can change over time, so children may fit different presentations as they get older
In addition to symptom count, impairment in two or more life arenas (school, work, social) need to be present. For children, such impairments are evident to teachers and parents. For adolescents and adults, individuals affected by ADHD can point to areas where they are impaired.
A comprehensive evaluation by an experienced healthcare professional is necessary to establish a diagnosis, rule out other causes, and determine the presence or absence of coexisting conditions. There are several types of professionals who can diagnose ADHD, including psychiatrists, pediatricians, clinical psychologists, clinical social workers, nurse practitioners, and neurologists.
Such an evaluation requires time and effort, and should include a careful medical and developmental history, and a clinical assessment of the child’s academic, social, and emotional functioning and developmental level. A clinician must consider a series of questions, with a focus on whether the symptoms reported are actually impairing the child’s life. Unfortunately, insurance companies typically do not cover the time required for pediatricians and primary care providers to do an adequate comprehensive diagnosis. Clinicians’ training and experience with ADHD is critical to increasing the accuracy of a diagnosis. While neuropsychological testing may be helpful to sort out learning disabilities and intelligence, such testing is not necessary or required to make the diagnosis of ADHD. While the presence of deficits on testing may indicate ADHD, the absence of deficits does not eliminate ADHD as a diagnosis.
Children who have ADHD and are not being diagnosed are the ones who suffer most. Faced with daily academic and social challenges, their efforts fall short because of the imposition of ADHD, a disorder they didn’t chose to have. As people in their life criticize them, self-image is battered. As frustration and failures mount, demoralization and withdrawal ensue. Should there be more research and training regarding the proper diagnosis of ADHD? Absolutely.
Advances in Research
Beyond the diagnosis of ADHD, there is a concept of executive functioning (EF), relating to organization, prioritization, working memory, and planning. While some researchers say EF is a category within ADHD, others believe it to be separate. So, some people with ADHD would stop showing deficits in EF when the ADHD is treated. However, others with ADHD will have significant deficits in EF even after treating the ADHD. Research regarding children with ADHD shows that greater academic difficulties are present when EF occurs with ADHD, compared to ADHD alone.
Another category of interest is emotion dysregulation. This concept is not part of the DSM-5 diagnostic criteria; however, researchers have been aware of these symptoms in ADHD patients. Emotion dysregulation occurs when a child – or an adult – fails to adjust his or her behavior in order to accomplish specific goals. It is described as emotional impulsiveness, difficulty in regulating emotions, or difficulty in establishing positive, more acceptable mood states. Dysregulation involves a child’s ability to select, attend to, and evaluate stimuli that lead to inappropriate physiological and behavioral manners. Think of emotion dysregulation as emotional impulsivity – it erupts with great intensity. Outbursts, aggression, and irritability are manifestations of emotion dysregulation seen in people with ADHD. While EF’s impairments occur with tasks, emotion dysregulation impairs social relationships with family and friends.
Where to Turn
Many parents simply don’t know where to turn to get the facts about ADHD and to access essential resources. I am proud to serve as a member of the National Board of Directors of the nonprofit organization CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder), the leading resource on ADHD. CHADD provides support, training, education, and advocacy for families, adults, educators, and healthcare professionals. The organization also serves as home to the National Resource Center on ADHD, funded by the U.S. Centers for Disease Control and Prevention, making it the most trusted purveyor of reliable, science-based information regarding current medical research and ADHD management. I strongly encourage parents to visit CHADD.org or call 310-306-7090 to learn more.