3

Impact of Misdiagnosis, Bias, and Stigma

“ADHD has a childhood face,” said Higgins, with many of the diagnostic criteria are based on children. ADHD is easy to pick up in a rambunctious young boy, but affected adults do not typically run around the workplace and climb on desks. Instead, he said, ADHD is likely to play out in adults as an executive function issue that rears its head in college or later in adult life, when individuals have to juggle family and career obligations. “Life gets faster and it catches up with you. . . . [This] is where I see a lot of the misdiagnosis,” he said.

“The lived experiences of individuals with ADHD are suggesting a range of adult expressions of ADHD that are yet to be empirically confirmed as core features of the disorder,” Sibley said. In the United States, there are twice as many adults with ADHD as children with ADHD (IQVIA, 2023), noted David Baker, former pharmaceutical executive and current board member for Edge Foundation. Nonetheless, underdiagnosis among adults was consistently raised by panelists with lived experience. “It’s not at all uncommon for adults to be diagnosed after their children,” said Duane Gordon, president of ADDA, who first sought care after his daughter was diagnosed with ADHD. Clinicians in attendance, including Childress, mentioned that mothers often ask them for their own evaluation after one of their children have been diagnosed.

MISDIAGNOSIS

ADHD is more challenging to diagnose in adults than in children, and there are several reasons for this, Sibley said. First, most attention problems are not related to ADHD. Concentration difficulties are the second most common symptom listed for conditions within the entire DSM-5. Adults have decades of accumulated illnesses, injuries, traumas, anxieties,

sleep problems, and behaviors that can be confused with ADHD, and all of these can also be comorbid with ADHD. Indeed, 20 to 30 percent of all adults report elevated ADHD-like symptoms on screening tests at some point in their life, and nearly 90 percent of these are false positives (Chamberlain et al., 2021; Sibley et al., 2018), she said.

Second, clinicians may be unsure when symptoms are severe enough for a diagnosis of ADHD, said Sibley. ADHD is a polygenic disorder that is influenced by the environment, and as in conditions such as autism, hypertension, and obesity, ADHD symptoms are distributed along a continuum. By one estimate, 60 percent of the population has at least one symptom of ADHD (Arcos-Burgos and Acosta, 2007). Individuals with extreme traits and impairments tend to be relatively easy to diagnose, and they are likely to have had a childhood history of ADHD, said Sibley. But many of those who first present as adults have milder symptoms, which makes it challenging for clinicians to assess if these individuals have severe enough symptoms for an ADHD diagnosis, she said.

Clinicians may have different opinions regarding the degree of impairment needed to get an ADHD diagnosis, said Sibley. Individuals may report chronic self-esteem problems and feelings of inadequacy, which are considered mild impairments and difficult for clinicians to assess, she said. Clinicians can gain clarity on these questions if they follow best practices in the diagnosis of adult ADHD, said Sibley, but as the survey that Childress presented demonstrates, many clinicians do not follow best practices.

Ramsay emphasized the ripple effects that the disease has on adult roles and relationships with spouses, children, friends, and coworkers. “There are a whole host of effects that make coping with ADHD in adulthood very daunting,” he said. Yet those affects may not always make a straightforward case for diagnosis and treatment. For example, “If your marriage is falling apart but your friends like you and you kept your job—or you’re losing your job and everybody else likes you—is that enough impairment to warrant . . . a diagnosis under DSM?” he asked.

These uncertainties show why objective assessment is important, said Sara Weisenbach, associate professor of psychology in psychiatry at Harvard Medical School and chief of neuropsychology at McLean Hospital. Even if a person does not report significant impairment, a 20-minute continuous performance test may reveal observations, reaction time, or errors. Weisenbach noted that while some things can be difficult to assess by informal observation alone, at the same time, the subtle indications of ADHD can crop up during clinical interviews. Clinicians should be aware of subtleties, such as an individual’s feeling like they have to work harder than their peers, as they work to obtain a more objective assessment.

One source of misdiagnosis, said Goodman, is “a presumption that treatment confirms diagnosis,” which is incorrect (Zametkin and Ernst, 1999). A positive response to stimulant medication does not confirm the diagnosis of ADHD; it “just means that you altered [the patient’s] brain chemistry, and [their] psychological experience is heightened mood, cognition, and energy.” The converse is also true: failure to respond to a stimulant medication does not mean that the patient does not have ADHD. This is a problem, he said, because clinicians who do not make an accurate diagnosis with a comprehensive psychiatric evaluation may prescribe a stimulant to see if it works and continue to prescribe it when the patient returns saying they are functioning better.

Additional Clinical Features of Adult ADHD

There is a long-standing challenge in diagnosing ADHD, said Steve Lee, professor of psychology and director of clinical psychology training at the University of California, Los Angeles, in that many symptoms are not unique to ADHD but instead may be defining for anxiety, mood disturbance, or other disorders. Noting the “delicate balance” between the need to better define ADHD and the risk of adding so many other features that nearly everyone gets a diagnosis, he asked which clinical features of ADHD should be considered or studied further.

Executive function is “imperative,” said Higgins, noting that many adult patients have problems with planning, prioritizing, procrastination, and organization. Emotional dysregulation is “the major drawback” that Tamara Rosier, founder of the ADHD Center of West Michigan and president of the ADHD Coaches Organization, sees in adults with ADHD, and it is common among Higgins’s patients as well. People of different genders handle this differently, Rosier observed, contrasting two of her clients: a female surgeon who hides her ADHD from colleagues, and a male surgeon who expects that his staff will make accommodations for him.

Although the diagnostic criteria for adult ADHD address problems with concentration, the question itself needs refining, said Weisenbach. Activities such as video games that offer immediate gratification should be distinguished from activities such as studying that offer delayed gratification. Adults with ADHD may be easily bored when carrying out activities tasks that offer a delayed reward. This may be similar to delay aversion—an aversion to the interval of time between reinforcements—which is addressed by some of the interventions used to manage ADHD in children, said Lee. “There is something about the ADHD nervous system that is very different,” said Weisenbach, citing work from the literature indicating that the vagal nerve and amygdala in people with ADHD are more “twitchy” (Robe et al., 2019).

The heterogeneity of ADHD symptoms is a big issue that further complicates diagnosis, said Sibley. Any of these additional clinical features may characterize one subset of ADHD but not another. Furthermore, when symptoms shared by people with lived experience of ADHD are compared to symptoms shared by people without ADHD, clinician often fail to differentiate among the two groups, she added. The symptoms may be worse in ADHD, “but unless there is a clear-cut differentiation, a clinician is going to be really struggling to figure out whether they have the disorder or not.” In this respect, Sibley noted that “the DSM-5 symptoms have withstood the test of time,” and while better symptoms are needed, “it’s really a tough challenge to figure out what those symptoms are going to be.”

Comorbidities, Trauma, and ADHD Diagnosis in Adults

The imperative against conferring an ADHD diagnosis if symptoms are “better explained by some other condition” conflicts with the reality that ADHD can co-occur with any of a multitude of other medical and clinical conditions, as well as the structural realities of time and resources needed to untangle the various threads of symptoms and causes, said Lee. How, he asked, can providers adjudicate the “not-better-explained-by-other-conditions” imperative while still accounting for the many other traits and comorbidities that can occur with ADHD? The problem of comorbidities is even greater for adults than children, noted Weisenbach, because untreated childhood and adolescent ADHD increases the later risk of depression, anxiety, and SUD.

Through her work with military populations, Brandi Walker, chief executive officer of Marie Pauline Consulting, LLC, indicated that she sees trauma as a significant comorbidity of ADHD. The trauma of the COVID-19 pandemic was a breaking point for many individuals with ADHD, said Taleed El-Sabawi, assistant professor of law at Florida International University. “There is a whole generation of women who were not diagnosed with ADHD,” she said. “They are just being diagnosed now because COVID [destroyed] their coping skills.”

Multigenerational ADHD exacerbates adversity, said Surman, affecting living conditions, accidents, interpersonal behavior, and parenting. Up to 17 percent of children with ADHD may have high prevalence of trauma or adverse experiences, a much higher rate than individuals without ADHD (Brown et al., 2017). “These different experiential or neuro-biological problems seem to overlap very often,” he said, and depending on their personal narrative, people may visit a therapist for trauma or a physician for ADHD, but given the prevalence of co-occurrence of these issues, it’s important to have a “multimodal option of supporting people.”

Treating Symptoms without an ADHD Diagnosis

Treating adult ADHD would be less stressful if it were possible to “step out of the diagnostic categories,” said Sibley. Some practitioners will say, “If you have a symptom cluster, and I know a solution to that symptom cluster, then I don’t need to think about the diagnosis—I could just treat [it],” she said. It becomes challenging when a diagnosis code is needed to justify the treatment. Practicing shared decision making, in which the patient prioritizes the symptoms that are causing them the most trouble, can also help focus practitioners on what to treat, she added. Without “these diagnostic boxes . . . we don’t have to have these difficult decisions about which one is primary and which is secondary, we could just help people with what they need help with.” Systemic factors “keep us using the boxes,” she said, and that is part of the problem.

When a patient comes in and says, “I’m depressed and anxious,” if ADHD is not included in the psychiatric comprehensive evaluation, the clinician will never see it, and the patient will be prescribed antidepressants, countered Goodman, and the patient will still have cognitive complaints. To complicate things further, he added, cognitive dysfunction is also characteristic of many adult mood disorders. Providers must determine if the residual cognitive problems are coming from depression or ADHD after the depression has been treated. By only treating the presenting symptoms, “you’ve missed the opportunity to treat ADHD,” Goodman argued. In a similar vein, Higgins noted that “poor attention is a symptom, not a diagnosis” and can happen for a myriad of reasons, which makes screening to rule out other conditions an “imperative.”

Providers Are Not Trained to Diagnose Adult ADHD

Few, if any, residency programs have any focus on adult ADHD, said Goodman. There is a lack of treatment for adult ADHD “because nobody has been formally trained,” he continued. A participant in the audience noted that ADHD accounted for zero of the 220 questions on the recent psychiatry boards.

Angela Mahome, staff psychiatrist at the University of Chicago, agreed. “I did not learn about ADHD in my general residency psychiatry, but fortunately, becoming a child and adolescent psychiatrist helped,” she said. Mahome consults for a school district in a small town where children with ADHD were given a methylphenidate drug, the generic Concerta, which was not lasting as long as expected, wearing off in four to six hours. Teachers told providers that the medication was not lasting through the school day, so the children were prescribed Ritalin in addition to the Concerta. This resulted in kids’ getting kicked out of school, she

said, because the stimulant exacerbated anxiety. “If the clinicians know how the medications work and they ask enough questions or they listen to the patients, a lot of times the treatment would get better. . . . More needs to be done for clinicians to understand ADHD,” added Mahome.

Mark Olfson, professor of psychiatry, medicine, and law and professor of epidemiology at Columbia University, noted that adult ADHD is “still a relatively recently recognized phenomenon” compared to child ADHD, and adult primary care practitioners vary in their familiarity and confidence. Whereas “pediatricians view uncomplicated ADHD as their turf . . . that’s less true in adult primary care,” he said; nonetheless, “a lot of the treatment for adults with ADHD goes on in primary care.”

Tiffany Farchione, the director of the Division of Psychiatry at FDA/CDER, said dispelling old myths takes time. Discussions around adult ADHD began about 20 years ago, she said, but myths persist, like those that say kids grow out of it or only boys have ADHD. “It’s easier to educate the uninformed [provider] than the misinformed,” said Goodman. In support of this, Solanto noted that it is hard to find professionals who are willing and able to take her patients when they age out of a pediatric ADHD program.

Lack of Provider Knowledge about Adult ADHD

Based on her experience treating college students from across the United States, Mahome has discovered many mistaken assumptions about ADHD among providers. “Many clinicians don’t realize that dose is not based on age, weight, size, or severity of symptoms,” she said. Providers do not know that overshooting the dose of stimulant medication can lead to worsening of symptoms and increased side effects. Some clinicians start patients on a middle dose of stimulant instead of starting at the lowest dose and increasing it if needed. Clinicians also do not understand how different stimulant formulations differ in their kinetics and interactions with other drugs and even some foods. Mahome provided the example of drinking orange juice interfering with the absorption of Adderall. “Even with nonstimulants, you have to be careful,” she added, describing a patient who had been sent to the emergency room after their pediatrician instructed them to simply stop taking their guanfacine, a medication used to treat both high blood pressure and ADHD, which if stopped abruptly can cause rebound hypertension.

ADHD Misdiagnosis and Health Inequities

In the school environment, young Black and Brown boys with ADHD are frequently misdiagnosed with oppositional defiant and conduct dis-

orders, said Higgins. If these boys are not appropriately diagnosed, or if they do not respond to medication, “then it is [interpreted as] a character flaw.” Black boys as young as five or six years old with ADHD fail to perform to their aptitude, leading to depression and even suicide at very young ages, said Higgins. These boys are often characterized by ADHD, another learning disability, and high intelligence quotient (IQ). They are very intelligent but unable to demonstrate their abilities in the classroom, and they constantly get into trouble. Racially, said Goodman, “I think that there is diagnostic prejudice amongst clinicians. The Black child does not get diagnosed; they just say he’s a [problem]. And the White kid gets diagnosed because . . . we know he could do better, so he must have ADHD.”

The type of language used in ADHD assessments is also a problem, added Higgins. Much of the language in questionnaires and psychometric tests is based on “northeastern, upper middle-class, white, Ph.D. language. America does not all communicate that way,” he said. At the clinical level, providers can miss the cues in patients’ anecdotes about their lives if they are speaking at different levels. These differences in language levels may be responsible for many misdiagnoses, Higgins added.

STIGMA, DISBELIEF, AND INEQUITY SURROUNDING ADULT ADHD

“We underestimate the degree to which stigma still exists with the diagnosis of ADHD, whether that’s childhood ADHD or adult ADHD,” said Baker. Baker has worked in other fields with doubts about the condition and/or stigma surrounding it, including hypercholesterolemia, osteoporosis, and migraine. In these cases, the medical community put considerable effort into educating people about the consequences of going undiagnosed and untreated, and over many years, the stigma and disbelief faded, he said. Obesity is another disease that was not taken seriously until the impact was quantified, said Almut Winterstein, distinguished professor of pharmaceutical outcomes and policy and the director of the Center for Drug Evaluation and Safety at the University of Florida. In contrast, “there has been resistance to [removing] stigma in ADHD over time that I have not seen in any other . . . disease state,” said Baker. “If [ADHD symptoms] were represented physically, I think we would have easier access to medication,” said Rosier.

However, Baker cautioned against assuming that “the answer is simply more education and more communication.” He suggested that the widespread persistence of disbelief in adult ADHD may reflect a “solution aversion” phenomenon (Ariely, 2023). “If you don’t like the likely solution to a problem, you’re less likely to believe that the problem really exists . . . [so] if you believe that a diagnosis of ADHD means you have

to be prescribed a . . . stimulant, then perhaps you’re less likely to believe that [ADHD] exists at all,” he explained.

Gordon acknowledged that there are a lot of questions around the validity of late diagnoses. “Why wasn’t I diagnosed until my thirties? Maybe nobody was paying attention to me. It was a failure of the system up to that point. . . . There were huge struggles [in my life] before that.” Ramsay noted that skeptics will say that people are looking for a shortcut, but in reality “adults with ADHD are working twice as hard for half as much, staying late at the office, spending weekends trying to catch up, to the sacrifice of other modes of well-being.” His patients’ goals are “pretty humble,” he said—to have good relationships and good physical and mental health—and “quite achievable,” based on treatment outcome research.

Rosier talked about the shame borne by many of her clients. “They’re smart enough to get through law school and then they hit the wall because they can’t . . . do their billing,” she said. “It becomes a character flaw. The level of shame these professionals are carrying, trying to be normal, is exhausting. . . . I think we can do better. . . . We can start giving people hope and proper treatment,” she said.

“We are having this complicated public discussion about whether the diagnosis of ADHD is an identity or a medical category,” said Sibley. “A lot of [clinicians] tell me it’s easier to just put ‘adjustment disorder’ on it than to really dive into what’s going on and what’s causing it.”

Jessica Gold, associate professor in the department of psychiatry at the University of Tennessee Health and Science Center and chief wellness officer of the University of Tennessee System, said that compared to adult patients, providers are better at believing kids and assume kids are being truthful about their symptoms. “I think we need to carry that with us into [our interactions with] adults and not assume that everyone is reading the DSM and asking for stimulants because they want stimulants,” she said. For Joseph Schatz, director of the psychiatric mental health nurse practitioner track at the University of Pennsylvania School of Nursing, who is also an adult with ADHD, just picking up his medication at pharmacies where he does not know the pharmacist has been “a really uncomfortable” and stigmatizing experience, something that numerous workshop participants acknowledged as also experiencing. Stimulant misuse has made providers skeptical toward people who are disclosing genuine struggles in their lives, and “we have to be really careful that we’re listening empathically and hearing their stories,” said Andrea Chronis-Tuscano, professor of psychology and director of the SUCCEEDS: Students Understanding College Choices, Encouraging and Executing Decisions for Success program for students with ADHD at the University of Maryland, College Park.

Nonetheless, in some respects “we have really advanced,” said Goodman, who was warned that he could lose his license for prescribing stimulants to adults in the 1990s. Although stigma remains a barrier to treatment for many with ADHD, human resources departments in most major corporations recognize ADHD, “and they recognize the requirements to make accommodations to occupational situations,” he said. Furthermore, the current generation of college students is “remarkably much more accepting [of mental issues] than someone in my generation—I think there is a tidal change here,” he added. Schatz concurred that “we are seeing an amazing shedding of some of that stigma [among] our Gen Z friends . . . but some of it is absolutely still present.”

Stigma of ADHD Crosses Race and Ethnicity

The stigma of ADHD plays out differently depending on the racial or ethnic context. Black parents may resist a diagnosis of ADHD for their son, said Higgins, because “what goes along with that is getting in trouble in school, being picked on many times by the teacher, by the school, and the higher risk of juvenile services and even incarceration for the rest of your life. . . . I’ve never seen a White mom cry with a diagnosis of ADHD, but I have seen Black mothers start to cry.”

Racial bias, language, and stigma combine to cause misdiagnosis, for example, when the parent says that the kid does not have trouble focusing “when he wants to do what he wants to do” and cannot have ADHD, combined with a clinician not astute enough to probe further, said Higgins. Then, if the teacher calls the kid a bad actor, he is likely to receive a diagnosis of oppositional defiant or conduct disorder. A child with ADHD may be having problems inside the home, may be dealing with poverty, or may be an immigrant who does not understand the language, said Higgins. Bias against an ADHD diagnosis is widespread, agreed Goodman. “Asian, Black, and Hispanic communities psychologize the experience of psychiatric symptoms” but do not always admit that there is a psychiatric illness.

Inequities, Biases, and Lack of Access to Care

Young girls with inattentive ADHD are often missed, said Higgins, since ADHD does not often manifest as behavioral disruptions in girls. “There’s a gender bias in the diagnosis of ADHD in females versus males,” agreed Goodman, noting a body of literature that speaks to gender bias in the medical evaluation of women and that “girls with ADHD end up more likely to be on antidepressants than boys with ADHD.”

Older adults face inequitable treatment due to diagnostic uncertainty and prescription hesitancy, said Goodman, while residents of rural com-

munities are underserved due to a scarcity of trained clinicians and the difficulties of traveling to obtain care. “There are tons of disparities,” said Mahome, and not just for minorities, as many assume that kids misbehave because of their background or socioeconomic status. For people with high IQs, she said, clinicians may assume that “if you did well in school, you cannot have ADHD.” Mahome was diagnosed during her residency program, and she also noted disparities for women. Schatz treats patients on long-term disability and unemployed people “who are told they don’t need their treatment because they’re not working.” He also noted the difficulties of getting treatment for patients with a history of or current SUD.

Kevin Antshel, professor of psychology and associate department chair at Syracuse University, noted that “there is great discomfort in diagnosing and treating ADHD on college campuses” (Thomas et al., 2015). Although 90 percent of college health professionals surveyed supported the use of stimulants, most college students with ADHD go off-campus to receive their treatment (Aluri et al., 2023), which is particularly difficult for first-year students who “are scrambling to find community providers . . . and it leads to the undertreatment of ADHD,” said Antshel.

Many of Rosier’s clients are doctors, lawyers, and others with high IQs who did not receive good treatment from local clinicians. Her clients receive medication education coaching to help them communicate with their health care provider “so that they can survive.” However, only a small fraction of adults with ADHD are lucky enough to get this treatment. “We are missing so many people who don’t have access,” she said.

Like everything else, the general insufficiency of care for adults with ADHD is worse for those who are economically disadvantaged, and that includes a disproportionate amount of people with ADHD, noted Gordon. “There are a lot of hoops to jump through . . . [just] to get on a waiting list” to get evaluated, he said. He knows adults with ADHD who waited two years for an appointment. “It costs a fortune to get the diagnosis on your own, it’s probably not covered by insurance, and we earn less than everybody else,” he added. Just finding providers who are experienced enough with ADHD is a big hurdle, added Ramsay. Sokolowska said that FDA is working to improve access to treatment by further investigating the role of telemedicine.

El-Sabawi offered her own experience of growing up with undiagnosed ADHD as an encapsulation of a generation of women that has struggled without diagnosis or treatment. “I’m part of that generation, and they just did not think we had ADHD. . . . We had to develop our own coping mechanisms. We were thought of as airheads.” Multiple times, she said, “I could have been referred and was not . . . probably because I’m a woman of color, also probably because of the stigma and stereotypes that women with ADHD are just flighty or not as intelligent as others.”

Throughout college and law school, El-Sabawi missed several important milestones, but none of her professors suggested she seek help. After her brother was diagnosed with ADHD, she sought treatment and was found to have “really bad ADHD.” She noted she was about 30 years old when she was diagnosed. “Imagine how much easier life would have been” had she been treated earlier, she mused.

ASSESSING ADULT ADHD: PRECISION VS. PRAGMATISM

Panelists explored the tension between the desire for precise psychometric measurements and the short time available to teachers and medical professionals for assessing ADHD in students and patients. “The amount you have to [bill] to keep the lights on and to make sure that everybody is paid [means that] everything in medicine is getting faster. . . . I know some clinicians who schedule patients every 10” minutes, noted Higgins. If providers are going to be asked to fill out a questionnaire in that time, the chance of it being done correctly is low, he said. Lee noted that “psychometrically speaking, measurement improves when we overmeasure . . . [but] that is going to be inversely correlated with the probability of clinical use.” How, he asked, could the field negotiate the desire for precision and rigor of measurement against the time-strapped reality of primary care physicians and teachers?

The field could take advantage of modern psychometric theory by using computerized adaptive testing in scoring for ADHD, suggested Weisenbach. In this type of test, an early question would differentiate moderately positive from negative cases, and the next question would be selected based on the answer to its predecessor. This enables a much shorter test that would decrease the time it takes to identify positive cases, said Weisenbach. Development of these tools would be a good target for funding, she added.

Although psychometric measurements are relevant for identifying people who need a closer look, “a psychometrically sound instrument . . . is not the same as a good diagnostic tool,” said Sibley. It is not enough to know the number of symptoms endorsed by the respondent. Self-reported symptoms are strengthened by collateral reports, even more than by performance on a cognitive task, which “can have a lot of false negatives,” she said. “We also need to know about impairment, differential diagnosis, when the symptoms started, the chronicity of these symptoms, and the pervasiveness, and that is the part that takes so much time.” Not all items should be weighted equivalently, said Lee. Conceding that few have the “time to use our best tools,” Sibley nonetheless noted that “we have a big downside of them not taking the time.”

“We need education to help people understand how to utilize these tools,” said Surman, describing patients whose medical management was based solely on their score on a continuous performance task. Diagnosing and following patients using only objective testing measures is not sufficient, he said, because ADHD is defined behaviorally. Sunny Patel, senior advisor for children, youth, and families at SAMHSA, expressed concern that using objective measures to diagnose patients could create a bottleneck that filters out some affected individuals and delays treatment, based solely on their test score.

Solanto pushed back against dismissing standardized questionnaires outright. The Conner’s Adult ADHD Rating Scale¹ and the Barkley Adult ADHD Rating Scale² were designed to describe symptoms as they are experienced in an adult context, she said. Scoring the longform versions of these tests produces an array of easily plotted symptoms, including “the DSM inattentive, hyperactive-impulsive, inattention-memory, [and] self-concept.” Solanto finds these tests to be very useful and not too time-consuming, and her patients do not mind taking them. “I rely a lot on that to be able to validate the symptoms,” she concluded.

Diagnostic Orphans

Because ADHD appears to exist at the extreme end of a continuum, as described by Sibley, it creates a problem of diagnostic orphans: individuals who do not meet the diagnostic threshold for ADHD but who are nonetheless impaired, said Lee. Considering that children and adolescents who fall just below the diagnostic threshold show persistence of symptoms and significant impairment later in life, participants discussed how adults in this category should be cared for.

The issue of diagnostic orphans reflects a need to re-envision what ADHD means and update the symptoms for adults, said Higgins. Many of his patients stop getting treatment when they finish high school because they do not see a need for it. “The ADHD doesn’t bother them,” he said, but then they start to struggle, and the current diagnostic criteria do a poor job of capturing their symptoms. Another hurdle, said Higgins, is the idea that “if it wasn’t identified before age 12 then obviously you don’t have ADHD.” However, many individuals manage their ADHD symptoms as children, or the condition is not noticed. They may stay

___________________

¹ Available at https://www.wpspublish.com/caars-conners-adult-adhd-rating-scales (accessed March 5, 2024).

² Available at https://www.remedypsychiatry.com/wp-content/uploads/2020/10/BAARS-ADHD-questionnaire-PLEASE-COMPLETE-with-respect-to-symptoms-while-OFF-ADHD-medication.pdf (accessed April 26, 2024).

under the threshold until later in adulthood, when life catches up with them, he added.

Sibley concurred that “the diagnostic orphans of today may become the severe cases of tomorrow,” noting that ADHD severity waxes and wanes over the lifespan (Sibley et al., 2022). There are risks to living with subthreshold ADHD, “and so we need to treat folks,” she said. The problem that clinicians are having, she added, is that “in our system, you have to diagnose someone to treat them. It’s forcing people to make choices about putting a diagnosis on paper in order to justify something.”

On the flip side, in a world where people use social media to project ideal versions of their lives, “we are in this situation where people are being asked to do too much,” and when they fail to meet unreasonable expectations, “they think it’s because they have ADHD,” said Higgins. This is a particular problem for women, who suffer feelings of inadequacy for not meeting lofty social, physical, career, and relationship standards, he said.

Impairment Due to ADHD

Worries about patients’ faking it add to the stigma of mental health, said Farchione. If someone just reports a bunch of symptoms to the clinician that they can look up online, “of course you’ll be worried about it,” she said. “The difficulty is that in psychiatry, the symptoms of brain dysfunction occur in a psychological experience and . . . there is no objective measure,” said Goodman. Even a knowledgeable clinician may be daunted when they see that an online search for “faking ADHD” gives more than 11 million results, he said. “How do I know the patient in front of me is not faking . . . and I’m going to prescribe a medication that’s going to go . . . where I can’t control?” These issues need to be addressed for clinicians, he said, for them to be comfortable moving forward in pursuing a diagnosis.

Symptoms can be faked, but impairment cannot, said Mahome. “Even people who are working on a PhD in astrophysics . . . can easily give me impairment, with car accidents and everything else, even though they were successful academically. . . . Most people don’t know how to fake impairment to someone who is skilled at assessing for ADHD,” she said. Patients who do not come into the office expecting an ADHD diagnosis are the ones whose lives you change, she added.

“It’s almost a silent diagnosis in the adult population,” said Walker, because ADHD is not obvious from the outside. But looking at patterns across a patient’s lifestyle, you can see things falling apart even if the individual doesn’t understand why, she added. Walker has to tell her patients that “executive function is all of your decision making . . . how

you plan and organize, time management, the critical things that keep you employed or keep your relationships together.” It is essential for clinicians to be educated about this, she said.

An Integrated Method for Diagnosing ADHD

ADHD cannot be diagnosed based on one test but instead requires integrating information from multiple sources, said Benjamin Cheyette, psychiatrist and director of ADHD programming at Mindful Health Solutions. His practice employs a battery of complementary tests, including two types of patient subjective surveys, one focused on childhood symptoms and the other on adult symptoms. He noted that each of these surveys has different strengths and weaknesses. The test results are integrated with information from the clinical interview and other aspects of the assessment. This integrative form of assessment is familiar to child psychiatrists, said Cheyette, but it is “all new” to adult psychiatrists. It is a process of getting people up to speed, he said, “but once you get that, it’s pretty straightforward.”

A Stepped Care Approach to Diagnosis of ADHD in Adults

To manage a huge increase in caseload at her former neuropsychological assessment clinic, Weisenbach developed a stepped care approach to screening and diagnosis of adult ADHD. For the first step, the referring clinician gives the patient a subjective self-assessment using a self-report scale of current symptoms (ASRS), obtains a childhood history to make sure that the onset of symptoms occurred in childhood, assesses for current functional impairment of symptoms, and if possible obtains a corroborative report. The ideal corroborative report would be someone who knew the adult well when they were a child, such as a parent or teacher, or even childhood report cards, said Weisenbach. If the screening measure and additional criteria are positive, the process goes to the second step.

For the second step, the patient completes an objective measure of ADHD symptoms, such as QbTest.³ If this result is positive, the practitioner should consider and address any comorbid conditions, including medications that might have cognitive side effects, and readminister the objective assessment. If ADHD symptoms are still present, the process goes to the third and final step, which is referral to neuropsychology.

After implementing this stepped care approach, Weisenbach’s clinic saw patients who were more complicated such as older adults and people

___________________

³ See https://www.qbtech.com/adhd-tests/qbtest/ (accessed March 5, 2024).

with comorbid conditions. ADHD should be thought of as a public health disease and managed accordingly, said Weisenbach, by screening widely, outlining steps for managing positive cases, and giving access to specialty care, including neuropsychology, to those who need it.