Conflicting Diagnoses? Take the Time to Get It Right
Although guidelines and criteria for diagnosing mental health conditions are defined in the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM–5), it isn’t always simple to arrive at a conclusive diagnosis. Why might a person receive different diagnoses from different professionals, or at different times in his life? What can you do to ensure accurate diagnoses for your child or for yourself? We spoke with two experts from CHADD’s Professional Advisory Board for answers.
Background: What is ADHD?
ADHD is a neurodevelopmental disorder. Researchers:
- have shown there’s a strong genetic basis in ADHD,
- have identified abnormal brain structures in people with ADHD, and
- are investigating a number of possible risk factors such as brain injury, prenatal alcohol or tobacco use, premature delivery, low birth weight, exposure to environmental toxins (such as lead), etc.
However, diagnosis is determined from behavioral symptoms.
The diagnostic criteria for ADHD
The DSM-5 describes symptoms of inattention and of hyperactivity/impulsivity that interfere with social, school or work functioning or development, and require for a diagnosis:
- To a degree that is inconsistent with age-appropriate behavioral norm
- Several of those persistent symptoms were present before the age of 12
- Those symptoms be present in two or more settings
- Those symptoms are not solely the result of, or better explained by, other disorders
Although these criteria are somewhat specific, and the DSM-5 provides examples of how symptoms manifest, there is opportunity for ambiguity:
- Information regarding the patient’s behavioral symptoms rely on subjective reporting and longitudinal memory from people who know the person to one degree or another, each of whom come with their own expectations of appropriate behavior. Often family members or friends are asked to share their memories of the person’s behavior over time.
- Some families and/or some cultures differ in what they consider to be age-appropriate behavior.
- Assessment based on settings can be very general (school, home, work), whereas a specific context, such as subject in school (for example, in science class vs. art class) or conditions (with one friend vs. in the entire class, before vs. after lunch, etc.) may yield widely different assessments.
- Several symptoms of ADHD are shared by other disorders. As one example, inattention is a symptom of ADHD but also of other disorders (such as anxiety, depression) and conditions. Steve Lee, PhD, a professor of Psychology at University of California at Los Angeles and a member of CHADD’s Professional Advisory Board, says that inattention is the “common cold” of mental disorder diagnostics.
The diagnostic process
- Initial screening interview. While talking with the patient, the professionals will assess the level of impairment and symptoms experienced.
- In-depth interview with patient and caregivers; address all DSM-5 symptom categories and conditions
- Order comprehensive medical exam and/or current records
- Separate interview (with older child or adult patient), or observe play or school activity (with child patient)
- For older children or an adult, administer behavior self-report rating scales
- Give rating scales for parents/caregivers, teachers, spouse/partner, others who know the patient well to complete.
- Review all data collected and make a diagnosis (which may be ADHD, other disorder, co-occurring disorders, or undiagnosed)
- Behavioral therapy, for patient and for parents
- Medication, if necessary
- Recommendations for educational or workplace accommodations
What could go wrong?
- Too little expertise. Many pediatricians or primary care providers lack the expertise or the time to conduct the rigorous elements of diagnosing ADHD, and may not be able to refer the patient to an ADHD expert for any number of reasons. Misdiagnosis or missed diagnosis may result.
- Too much information. On the other hand, Dr. Lee notes the amount of information (not always science-based) on the internet and public media can lead to “do-it-yourself” diagnoses, thus short-circuiting an effective assessment. When parents or adults cherry-pick symptoms and conclude their problems are an indication of ADHD, they disregard the importance of the full diagnostic process, including the consideration of many other explanations for inattention and hyperactivity.
- Personality traits. Craig Surman, MD, an ADHD specialist at Harvard Medical School is a co-chair of CHADD’s Professional Advisory Board. He emphasizes the role personality traits play in mental health conditions. These include processing styles and preferences that are internal to the person, versus the more easily identified external behaviors noted in the DSM-5 criteria. As such, traits are often unclear and hard to identify. Although personal traits can contribute to the impairment of disorders, they can also contribute to resilience, but are not typically included in diagnoses. They are a reflection of executive functions that can be nurtured, your “invisible scaffolding,” Dr. Surman says–what you want, are interested in, have support and capacity for.
- Flawed inputs from families, teachers. Dr. Lee supports the influence of personal traits in expression of ADHD symptoms when he notes that people with difficult temperaments can provoke negative responses from their caregivers and other people in their social environment. The frequency of such responses early in life affects the person’s neurocognitive development, shapes his self-image and perpetuates not only his difficult temperament but also others’ view of his behavior.
- Shared symptoms. Because many ADHD symptoms are shared with other disorders, it is possible to either diagnose the wrong disorder or miss the possibility of co-occurring conditions. When there is a more severe impairment occurring, ADHD can be hidden beneath it.
- Symptom variability through life stages. Behavioral symptoms may fade or come out throughout the stages of a person’s life due to hormonal or other conditions and events, which can cause new diagnoses from new professionals.
What can you do?
“Don’t settle for a quick assessment,” advises Dr. Surman. He emphasizes the importance of following the DSM-5 criteria, which he says empowers parents and adults to bring the right information to the provider. He particularly notes the criteria of symptom persistence in multiple settings, including specific situations. You may not be attentive because you’re uninterested in the topic of discussion. You may be impulsive when you haven’t had a good meal.
Dr. Lee also recommends keeping a log of when specific symptoms began occurring; and when they developed relative to each other. This information can help your professional determine which is primary, which is secondary, and the influence of one symptom or condition on the other.
Dr. Lee says “words matter.” The way in which you think about and go about seeking an understanding of your child’s or your behavioral and cognitive conditions can skew outcomes. When you say, “I’m looking for an ADHD diagnosis,” that skews the symptoms you present toward ADHD, when in fact that might not be the right diagnosis. First get an unbiased assessment from a knowledgeable professional; that person will be more likely to develop an accurate diagnosis—ADHD or not.
Dr. Lee offers these additional recommendations:
- Avoid labels–of your own or your child’s diagnosis. Labels drive behavior.
- Interventions can be independent of diagnoses. Behavioral interventions such as positive parenting can have a positive impact with or without an ADHD diagnosis.
- Start with a treatment plan that is balanced and moves in a step-by-step manner. In some cases it may not be certain that you or your child requires medication, so where possible begin with behavioral interventions focused on specific behaviors, to see if that makes a big enough difference over time. If it does not, your health care provider may add a low dose of medication and to see if there is improvement in symptoms, and so forth, increasing dosage as necessary.
Steve S. Lee, PhD, is a member of CHADD’s Professional Advisory Board and a professor of Psychology at the University of California at Los Angeles. He is president-elect of the Society of Clinical Child and Adolescent Psychology (Division 53 of American Psychological Association). A former recipient of CHADD’s Young Scientist Award, Dr. Lee has researched and authored numerous studies.
Craig Surman, MD, is a co-chair of CHADD’s Professional Advisory Board. He is the scientific coordinator for the Adult ADHD Research Program of the Clinical and Research Programs in Pediatric Psychopharmacology and director of the Adult ADHD Clinic at Massachusetts General Hospital, and is an associate professor of Psychiatry at Harvard Medical School. He is also co-author of Fast Minds: How to Thrive If You Have ADHD (Or Think You Might).
What was the evaluation process like for you or your child? Do you think the professional spent enough to properly understand your experience with symptoms?
“My child got different diagnoses from three different professionals. What can we believe?” We often hear this problem from callers to CHADD’s National Resource Center on ADHD. Continue reading to understand why this may occur, and what you can do about it.