Why ADHD Is a “Fuzzy Diagnosis”
ADHD rarely travels alone. The vast majority of people with attention deficit also have at least one other neurological condition, which makes symptom identification and treatment tricky at best. Here, ADHD specialists explain how to ensure you’re getting the best possible evaluation.
A Fuzzy Diagnosis
It is not easy to make an ADHD diagnosis. Unlike diabetes or heart disease, ADHD can’t be detected with a blood test or scan. “Like other psychiatric diagnoses, the boundaries of ADHD are fuzzy, so clinician judgment plays a big role,” says Joel Nigg, Ph.D., a professor of psychiatry, pediatrics, and behavioral neuroscience at Oregon Health & Science University.
Adding to the difficulty is the fact that there is little formal training on ADHD in medical school. “Most professionals do not have sufficient information about how to assess ADHD and treat it,” says Thomas Brown, Ph.D., an assistant clinical professor of psychiatry at Yale University School of Medicine.
So what is the best way to get an accurate diagnosis? While there is no single test to check for ADHD, there are several assessments that can guide a skilled clinician to making an accurate diagnosis.
Erika Merrill Braga, 45, can remember having problems with her attention span since she was a child. “I can remember back to third grade,” she says. “I was messy and all over the place.” Erika’s parents took her to several counselors to figure out why she was having difficulty in school, but no one was able to pinpoint a medical problem. “They said I wasn’t motivated enough or was lazy.”
The problems continued into adulthood. Erika, who lives in Westport, Massachusetts, had trouble completing tasks at work and staying organized at home. She spoke to several psychologists and physicians, even presenting them with the idea that she may have ADHD, but they all believed she was depressed. “My primary-care physician told me that adults don’t have ADHD,” she says.
Persistence paid off, however, when Erika found a licensed mental health care provider at a public clinic to see her. After a two-hour evaluation, Braga was told she had ADHD inattentive-type. “I felt like someone had given me a million-dollar check,” she says. “It was validation.”
In many cases, a family doctor is the first person to consult with if you suspect that you or your child has ADHD. He or she can do some initial testing to rule out medical conditions that act like ADHD, such as low iron levels and thyroid imbalances. “Make sure your child is healthy before you see an ADHD expert,” says Nigg.
Don’t pressure your doctor to make a diagnosis. That is how incorrect diagnoses get made. “Parents insist on something being done, so the pediatrician feels that he needs to act,” adds Nigg. If your physician starts to write a prescription for ADHD medication, stop him and insist on a follow-up with an expert in diagnosing ADHD.
Finding a qualified ADHD expert isn’t easy. If your physician cannot suggest someone, contact your local chapter of CHADD (chadd.org) for advice on the best local experts. The best ADHD specialist — whether he or she is a psychiatrist, psychologist, pediatric neurologist, behavioral M.D., or something else — will have had years of experience in diagnosing and treating ADHD. Adults need an expert who has experience with ADHD in adults, which can be harder to diagnose. “There’s a lack of trained people to talk to adults,” says William Dodson, M.D., a psychiatrist from Denver, Colorado.
The first meeting with an ADHD expert should be lengthy. It should start with a long discussion to help her get to know you or your child, and it should take a detailed look at the problems and challenges that brought you to her office.
“The best tool for a clinician is a well-conducted interview with the patient and parent,” says Brown. “An expert will want to find out about how the child does in a range of activities.” (For a list of questions to expect, see “Interview with the Patient.”)
It’s important to be honest and open when answering questions. “It’s always difficult for a clinician if the parent won’t admit that the home life needs improvement,” says Nigg. A recent family event, a move or divorce, for example, can cause behavior problems in a child that have nothing to do with ADHD. Based on this interview, each expert may use a different set of tools to further evaluate a child and whether his difficulties indicate an ADHD diagnosis.
Guides, Books, Rating Scales
The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard reference guide for mental health disorders. This book provides a checklist for health-care providers to use in assessing someone for ADHD. The newest version of the DSM checklist contains two categories, inattention and hyperactivity/impulsivity, each with a list of nine symptoms that a person with ADHD may exhibit. According to the DSM-V, a child under the age of 18 with ADHD will display six or more of the symptoms in either category for at least six months, noticeably before age 12.
“The DSM checklist is a guide, but I wouldn’t make a diagnosis based on it,” says Brown. “There are some people with ADHD who are not going to have all six of the symptoms required by the DSM for diagnosis.”
For adults, the DSM is less helpful.An ADHD diagnosis in adulthood emerges only from a careful clinical interview. Experts agree that an adult needs to meet only four of the nine criteria to signal that he may have ADHD. “The DSM is an inadequate tool to diagnose an adult,” says Dodson.
The DSM-V finally addresses ADHD in preschoolers, opening the door for an ADHD diagnosis in children as young as 4. For younger children, “you want to take the diagnosis process slowly, with someone who specializes in treating that age group,” he says. Thanks to the new guidelines in the DSM-V, the American Academy of Pediatrics (AAP) now recommends evaluating and treating children for ADHD beginning at age 4, and starting with behavioral interventions for treatment in younger children.
For children under the age of 16, a clinician may use a standardized rating scale to make a further assessment. There are various rating scales available, but they all consist of long surveys to be completed by the parent, the child’s teacher, and, sometimes, the child himself. The goal of these rating scales is to compare everyone’s opinion of a child’s abilities in a structured way. Rating scales help a clinician assess whether a child has ADHD, its severity, and whether the child has an additional disorder that affects his or her performance in the classroom.
Susan Scarpiello first saw her pediatrician when her son, Frank, began having difficulty following directions and interacting with his peers, at the age of 7. After discussing her son’s problems, Scarpiello filled out a rating scale, and it was quickly determined that Frank did indeed have ADHD. Without hesitation, the pediatrician prescribed stimulant medication.
Medication didn’t help, however. The three medications they tried all left Frank spacey, withdrawn, and pale. “After the third medication, we had enough,” says Scarpiello.
She decided it was time to find someone who specialized in ADHD. She believes that her son has a secondary disorder, as well as ADHD. “He must have ADHD, but there has to be another piece to it,” she says.
This wouldn’t be unusual. “Over 80 percent of kids with ADHD have a second disorder, which really complicates the diagnosis of ADHD,” says Russell Barkley, Ph.D., a clinical professor of psychiatry and pediatrics at the Medical University of South Carolina. Anxiety, mood disorders, and learning disorders often go along with ADHD.
Disorders That Come with ADHD
As Scarpiello is finding out, determining whether a child with ADHD has a secondary disorder isn’t straightforward. Evidence of a secondary disorder may become apparent during the screening interview, and can be explored with additional questions and standardized rating scales for mood disorders, anxiety, or other conditions.
“The steps to address a secondary disorder are the same — pursue the possibility through a clinical interview and standardized rating scales,” says Nigg, “The biggest challenge is not mechanical but mental. The clinician should not prematurely exclude other conditions when he thinks he sees ADHD.”
Even if a secondary disorder is not apparent, a clinician should ask questions about its possibility, such as a family history of mental-health issues, anxiety over routine tasks, or a history of mood disorders. If a clinician suspects a cognitive problem, he may check for a learning disability by testing intelligence, memory, and reading ability. “A good clinical interview and evaluation will consider these comorbid conditions routinely,” says Nigg.
High-Tech Tools to Diagnose ADHD
In July 2013, the U.S. Food and Drug Administration approved a new medical device, based on brain function, for the diagnosis of ADHD. The device, called the Neuropsychiatric EEG-Based Assessment Aid (NEBA), records electrical impulses that are given off by the brain.
In clinical trials, the NEBA system has shown that the ratios of particular brain waves are different in children with ADHD. The device has not been tested on adults, and many experts doubt the test’s utility. “The field has been through a number of these machines that purport to work, but anyone who’s been in this for a while will always be skeptical,” says Dodson.
If a NEBA test appears abnormal for a child, there is a high chance he or she has a problem that needs to be addressed, but “there are people with ADHD who won’t show up as abnormal,” says Barkley. And this new test is expensive. Most important, “it’s not going to diagnose ADHD,” says Dodson. “The test is just going to say that it’s a little more likely in a given child.”
Forms of brain imaging, such as SPECT imaging scans, may also be suggested as a way to look at the brain for evidence of ADHD, but they are also expensive, and many experts are pretty sure that they won’t help. “There is no imaging test that can make a diagnosis of ADHD,” says Brown. “They are just snapshots of the brain, showing just a second of brain activity. ADHD happens over time.”
Computer-Based Tests: Do They Help?
Computer-assessment tests for ADHD, such as TOVA and the Quotient ADHD Test, score children on their ability to follow along with simple computer games. While these tests are good at measuring attention to a particular game, Brown worries that some children with ADHD are good at playing games. “I’ve seen 1,000 children and adults with ADHD who have no difficulty playing video games, but they can’t sit still in math class,” he says.
Though their accuracy is doubtful, scores from these neuropsychological tests are sometimes required by school districts when a child applies for special education or assistance in the classroom. So, “if you take these tests, and you get a normal score, disregard it,” says Barkley. “And if you get an abnormal score, you still need the interview process to find out what’s really wrong.”
The Bottom Line
As Braga and Scarpiello found out, there is no quick test for ADHD, but a proper diagnosis is crucial. As Scarpiello continues to seek help for her son, she is hopeful that someone will be able to piece together all of the clues to get him a proper diagnosis. “It’s not getting any easier,” she says.
Finding the best ADHD expert in your area is the most important step toward getting an accurate diagnosis of ADHD. It may take several appointments, but the clinician should use all the information at his disposal to assess you or your child and to guide a treatment plan.
“Now that I understand what ADHD is, everything else makes sense,” says Braga.
Experts agree that there is no single test that can diagnose ADHD. The most crucial part of an evaluation is an extensive conversation among the ADHD expert, parents, and child.
Expect your first appointment with a clinician to be long — at least two hours. The conversation should cover your child’s medical history, and his or her abilities both inside and outside of the classroom. If these subjects are not addressed at your initial appointment, insist on it or at a follow-up, or find a new doctor.
Here are some questions you can expect to be asked:
> What are the problems you are seeing? Are they recent problems, or have they been going on for a while?
> Which types of activities are easy for your child? Which are more challenging?
> What does your child do for fun?
> Is your child getting enough sleep? Exercise?
> Is there a history of ADHD in the family? Is there a relative who has similar attention problems?
> What’s the emotional tone at home? Have there been any changes in the family? Is there any new stress in the child’s life?
> What are you hoping we can do here today?
A clinician may address these questions to the parents and the child, depending on his age, to get both viewpoints. Something that seems like a big deal to a parent may not be the biggest problem for the child. Teachers’ opinions and school records may also be brought into the conversation to help the clinician get the whole picture of a child’s behavior.