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ADHD Diagnosis and Treatment in the United States

The workshop began with an overview of how ADHD in adults is diagnosed and the various treatment options available to them. Presentations and panel discussions focused on the criteria and available tools for diagnosis of ADHD in adults; challenges to appropriate diagnosis of ADHD for different adult populations; and the implications of treatment options.

EXPLORING CURRENT ADHD DIAGNOSIS AND TREATMENT

Adult ADHD: Definition, Diagnosis, and Prevalence

ADHD is characterized by “impairing levels of inattention, disorganization, and/or hyperactivity-impulsivity,” said Childress (APA, 2013). To qualify as ADHD, Childress explained that impairment must begin before age 12, it must interfere with functioning or development, and other conditions must be ruled out. ADHD often continues into adulthood, where it impairs social, academic, and occupational functioning. Though not included in the clinical definition, emotional dysregulation or impulsivity is another hallmark of ADHD, she said (Childress, 2023).

The prevalence of ADHD among adults (ages 18 to 55), in the United States is estimated at 4.4 percent (Kessler, 2006), making it one of the most prevalent mental health disorders, said Surman. A prevalence of 4.4 percent places ADHD as the third most prevalent mental health conditions U.S. adults experience, behind generalized anxiety and major depression, respectively (NAMI, 2023). Childress expanded that in adults overall, ADHD is slightly more prevalent in men than women and continues to be seen in adults as they age, with some studies indicating a 2.8 percent prevenance among adults ages 60 and older (Michielsen et al., 2012; Solberg et al., 2018). Overall, prevalence is lower in African Americans, Native Americans, Pacific Islanders, and Asian Americans compared to Whites (Chung et al., 2019), but Childress acknowledged that those populations are vastly underrepresented. She continued to explain that the burden carried by those with ADHD includes lower earnings, lower academic

achievement, more car crashes, and an increased risk of death when compared to unaffected peers (Mustonen et al., 2023). ADHD alone increases the risk of death 1.5-fold. When combined with one comorbid condition like depression or anxiety, the risk increases fourfold. Two comorbid conditions along with ADHD increase the risk of death by a factor of eight; three comorbid conditions increase the risk by a factor of 15; and four comorbid conditions increase it by a factor of 29 (Solberg et al., 2018).

On a societal level, adult ADHD costs the United States in excess of $100 billion annually, said Surman. Furthermore, “ADHD leaves a trail of challenges far beyond individuals themselves,” continued Surman, causing damage within families, educational settings, the workplace, and society at large (Schein et al., 2022). As many as a quarter of individuals in the criminal legal system could meet diagnostic criteria for ADHD, he noted.

Tools for Diagnosing ADHD in Adults

Diagnosing ADHD correctly requires a thorough clinical history, which takes time to collect, said Childress. The clinical interview should inquire about symptoms, impairments, and comorbid conditions. Given the strong heritable nature of ADHD, a thorough family history will probably identify an affected relative, she added. It is important to look for other medical conditions that might cause ADHD-like symptoms and for conditions that might complicate treatment, such as cardiac issues. The interview includes use of rating scales, which can be either patient reported or clinician administered. Childress recommended the Adult ADHD Self-Report Scale (ASRS-v1.1),¹ which scores the 18 criteria specified in DSM-5 and can be completed in about five minutes. Childress referenced various other diagnostic tools typically used in clinical trials, including the Adult ADHD Clinical Diagnostic Scale (Adler et al., 2017) and the Adult ADHD Investigator Symptom Rating Scale (Spencer et al., 2010). She highlighted that while the scales rate executive function, quality of life, and impairment, they are not practical for general use due to their time requirement.

Several participants emphasized the need for short diagnostic questionnaires that could be completed quickly. This is particularly necessary for teachers, who are typically the first to detect ADHD in children, said Napoleon Higgins, president and chief executive officer of Bay Pointe Behavioral Health. “As a former teacher,” he said, “please do not hand me a scale that has 100 questions [while] I am working . . . with 20 other

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¹ Available at https://www.apaservices.org/practice/reimbursement/health-registry/self-reporting-sympton-scale.pdf (accessed March 14, 2024).

kids. . . . The shorter the questionnaire, the more likely . . . it [will be] accurate.”

Comorbidities and Gender Differences

More than 70 percent of adults with ADHD have at least one comorbid psychiatric disorder, said Childress (Pehlivanidis et al., 2020). Approximately 55 percent of adults with ADHD have depressive disorders, 47 percent have anxiety disorders, 41 percent have SUDs, and 35 percent have bipolar disorder. Childress stressed the importance of screening for these comorbidities in clinical practice, indicating she uses for this purpose the Mini-International Neuropsychiatric Interview (Sheehan et al., 1998), which “can get through the entire DSM in 15 to 30 minutes.”

Among adults with ADHD, the spectrum of symptoms and comorbidities varies based on gender, said Childress (Young et al., 2020). Men have more externalizing problems like antisocial behaviors, while women are more likely to have emotional problems, anxiety, depression, and borderline personality traits. Women with ADHD are also at a higher risk for severe mental illness, such as schizophrenia (Young et al., 2020). Symptoms of ADHD may be less overt in women, leading to a delay in diagnosis, she said. Childress has seen many adult women patients who had been diagnosed with anxiety and treatment-resistant depression that turned out to be driven by ADHD. “When the ADHD was treated,” she said, “the depression got better.”

Choosing ADHD Treatments

All ADHD drugs have possible adverse physical, mental, and cardiovascular effects, said Surman. However, of the many versions of stimulants currently on the market, only six of the long-acting formulations include data generated from adult experiences on the label. There are few clinical studies that compare one drug to another, so “clinicians need to draw . . . largely from their own experience” when choosing which drugs to prescribe, he said.

Comparisons between nonstimulants and stimulants are also complicated by several other factors, including differences in dosing between the two types of medication. Surman said that drug labels tend to indicate higher effects for stimulants than nonstimulants, which is likely one reason nonstimulant medications are not as commonly prescribed for ADHD in the United States. Many adults take multiple drugs to treat other conditions in addition to ADHD, creating issues of polypharmacy, he noted. Study populations exclude many individuals who have co-occurring conditions that affect their mental health.

The only way to understand the unintended long-term health effects of treatments is to study users for long time periods—longer than controlled clinical studies allow, said Surman. For this reason, he emphasized the “incredible importance” of the system of postmarket surveillance that allows patients to be followed indefinitely. The large longitudinal datasets that have been collected by countries with centralized health records, such as Sweden and Denmark (Schmidt et al., 2015; Swedish National Board of Health and Welfare, 2019), are also proving valuable, he said.

Medication is not the only effective treatment for ADHD, noted Surman. Cognitive behavioral therapy (CBT) has been shown to work well when combined with medication (Lopez et al., 2018). While ADHD is a disability covered by the Rehabilitation Act of 1973² and the Americans with Disabilities Act of 1990,³ accommodations are not treatments, Surman noted. However, he said, an environment of accommodation can make a real difference in the lives of people with ADHD. While most accommodation has occurred in educational settings, workplaces are now learning how to implement practices that accommodate neurodiversity, he added.

A Snapshot of Adult ADHD Care in the United States

Childress shared early results of a survey she and colleagues at Medscape conducted during the early stages of the ongoing 2022 stimulant shortage to understand how clinicians were addressing adult ADHD during this time. The survey began in November 2023 and included health care providers and patients (Childress, 2023). Childress presented data from the first three weeks of the clinician survey. The survey questioned attitudes, skills, competence, barriers to diagnosis, and the burden of treatment as perceived by physicians and nurse practitioners. On questions of adult ADHD prevalence, risk factors, comorbidities, and impact, only 45 percent answered questions correctly, said Childress. Only 41 percent correctly identified the diagnostic criteria and knew about screening tools and underdiagnosis. Although 71 percent correctly answered questions about treatment outcomes, only 49 percent knew about all the available treatments. In short, “There is a huge lack of knowledge . . . [even though] these are people that are treating ADHD,” she said.

Regarding the types of drugs being prescribed, 84 percent of the clinicians reported prescribing short-acting stimulants, and less than half of these switched to prescribing nonstimulants in the wake of the stimulant shortage (Childress, 2023). In many cases, insurance carriers pushed pro-

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² Rehabilitation Act of 1973, Section 504, Public Law 112, 93rd Cong. (September 26, 1973).

³ Americans with Disabilities Act of 1990, Public Law 336, 101st Cong. (July 26, 1990).

viders to prescribe short-acting stimulants by requiring prior authorization for nonstimulants or refusing them altogether, said Childress.

In Childress’s survey of patients with ADHD, individuals were asked about the burden of illness and barriers to treatment. More than half reported multiple quality-of-life issues that were negatively impacted by ADHD, including memory or cognition, work or school, getting to places on time, sleep, finances, and relationships. Sixty-eight percent had also been diagnosed with an anxiety disorder and 49 percent with depression. Nonetheless, only half of the respondents were currently undergoing treatment for their ADHD. Half of those in treatment were receiving long-acting stimulants, 37 percent were on short-acting stimulants, and 21 percent received nonstimulant medicine. Half were in counseling or therapy. Only 28 percent of those on stimulants were completely satisfied with their care. Medicine shortages were reported by 41 percent of patients overall. The single most important consideration for patients when choosing a treatment for ADHD was cost. When asked to name the top barriers affecting their ability to get treated for ADHD, patients cited difficulties obtaining a controlled medicine; the drug being out of stock; the drug being too expensive (or not covered by insurance); and troubles dealing with the health care system.

Summarizing her results, Childress said that ADHD is common and its diagnosis in adults is complex, but it can be effectively treated. However, many practitioners lack knowledge about adult ADHD. Half of patients are not getting treatment, and the cost of medication and insurance coverage are a huge barrier to care.

Lara Robinson, behavioral scientist for the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC), presented preliminary results from the CDC’s Fall 2023 Porter Novelli DocStyles Survey,⁴ which asked providers of ADHD care for both adults and children about ADHD identification, treatment, referral, knowledge, and resources. Approximately 1,500 practitioners were surveyed, with half of child providers and two-thirds of adult providers reporting inadequate training in ADHD, said Robinson.

Lack of Guidelines for Diagnosis and Treatment of Adult ADHD in the United States

“One of the leading challenges in finding the right balance around the diagnosis and treatment of ADHD is that there are currently no United States guidelines for diagnosing and treating adults with ADHD,” said Califf, calling the establishment of guidelines “a necessary step in advanc-

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⁴ Available at https://styles.porternovelli.com/docstyles/ (accessed April 26, 2024).

ing the quality of care.” The United Kingdom, Canada, the European Union, and Australia have published adult ADHD practice guidelines (Alliance, 2020; Kooij et al., 2010; May et al., 2023; NICE, 2018), noted both Childress and David Goodman, assistant professor of psychiatry and behavioral sciences at Johns Hopkins University School of Medicine. “The U.S. is the only major developed country without either national or regional guidelines on [adult] ADHD diagnosis,” said Margaret Sibley, professor of psychiatry and behavioral sciences at the University of Washington School of Medicine. Diagnosis of ADHD in adults still relies on symptoms as presented in children, reflecting a dearth of data on how the disease plays out in adults, she added.

An APSARD task force is performing the critical task of “aggregating our communal empirical, clinical and experiential knowledge” to develop national guidelines for diagnosing and treating adult ADHD, said Sibley. Working with the guidelines developed by APSARD, Children and Adults with ADHD (CHADD) will develop professional toolkits tailored to specific medical specialties as well as parents and caretakers, noted Goodman along with Russell Ramsay, cofounder and former codirector of the Adult ADHD Treatment and Research Program at the University of Pennsylvania, and Mary Solanto, professor of pediatrics and psychiatry at the Zucker School of Medicine at Hofstra-Northwell.

Califf urged that the process of developing the guidelines be adequate to address concerns of bias or conflict of interest. He cautioned that guidelines can be “treacherous” when clinical evidence is inadequate. “We lack fundamental information on who should be treated, disparities in diagnosis, and assessments of clinical practice that would allow us to make rational decisions about how to approach supply and demand,” he said, suggesting that clinical guidelines distinguish between recommendations based on high-quality evidence and those based solely on expert opinion. Goodman described the “tediousness and difficulty [and] rigor” that is going into development of the guidelines (Goodman, 2023; Goodman and Mattingly, 2023).

Key questions about ADHD symptoms can be addressed through well-funded and thoughtfully designed studies, said Sibley. However, even though adults make up a majority of the U.S. population with ADHD (Cortese et al., 2023; Song et al., 2021), active NIH research spending on ADHD in adults in 2023 was “just a sliver” of what was spent on ADHD research overall and less than 1 percent of the $650 million spent on depression research, she added. ADHD is the second most prevalent psychiatric disorder, Goodman pointed out and called the lack of funding for research on adults with ADHD “appalling.”

Diagnostic tools need to be improved to be “more efficient and more accurate,” said Sibley, but this is difficult without crucial data. “We

have very little collective knowledge of what adult ADHD looks like, whether it can be transient, environmentally determined, gender specific, hormonally influenced, secondary to other problems, or late onset,” she said. Further complicating efforts at diagnosis, she added, “we do not have language to describe ADHD-like symptoms that are not ADHD.”

Solving the dilemma of who should be treated for ADHD, and how, will require research that seeks to answer fundamental questions about the epidemiology of ADHD and the risk-benefit balance of treatment in diverse patient populations, said Califf. While research “has not shown a causative progression from the use of prescription stimulants to the use of illegal stimulants . . . absence of evidence is not the same as evidence of absence,” said Califf, particularly in light of the recent increase in prescription stimulant use and the widespread availability of amphetamines outside prescription channels. Citing this and other questions regarding the use of stimulants to treat ADHD in adults, Califf committed himself to working with colleagues across the Department of Health and Human Services “to explore these topics in the detail that they deserve.”

Concerns Regarding Misuse, Abuse, and Diversion of Prescription Stimulants

Recognizing that many FDA-approved drugs to treat adult ADHD are stimulants, concerns about misuse of ADHD drugs have led to strict controls on access, and these controls contributed to a recent, nationwide shortage of prescription medication for ADHD (FDA, 2023a; Scott, 2023; Wolkoff Wachsman, 2023). Workshop participants considered the types and extent of stimulant misuse, while panelists with ADHD recounted their experiences seeking treatment and managing unmedicated ADHD during the drug shortage.

Misuse, abuse, and diversion of prescription stimulants constituted one of the focal points of this workshop. Surman offered the following definitions for these terms within the context of the workshop:

• Misuse is improper or unhealthy use of a prescription drug, including without a prescription of one’s own or in a way other than prescribed, such as in greater amounts, more often, or for a longer period than prescribed (SAMHSA, 2021);
• Abuse is the misuse of a drug (prescription, illicit, psychoactive substance, or alcohol) to get high or inflect self-harm (FDA, 2017; SAMHSA, 2005); and
• Diversion is when a drug is directed outside of prescribed channels, for example, to a different marketplace or shared between individuals (CMS, 2016).

The literature on misuse, abuse, and diversion of medication by adults with ADHD centers around college-age students, said Surman, where medication misuse happens with a 10 to 20 percent prevalence (Benson et al., 2015). In 2015 the Substance Abuse and Mental Health Services Administration (SAMHSA) reported a 10 percent lifetime misuse of stimulants, with peak occurrence at age 21 (Hughes, 2016). Most prescription stimulant diversion occurred between friends. Some individuals with ADHD may seek medications outside the regulated marketplace, where fake pills may contain dangerous chemicals such as methamphetamine and fentanyl, noted Surman.

REFLECTIONS ON THIRTY YEARS AS AN ADHD ADVOCATE

Evelyn Polk Green is the immediate past president the Attention Deficit Disorder Association (ADDA), the past president of CHADD, an adult with ADHD, and the mother of two adult sons with ADHD. Many of the items discussed at this workshop were being talked about 30 years ago, she said, noting that while some things have improved, many still have not.

Green was a “poster child” for undiagnosed ADHD until adulthood. As a child with a supportive family, she did well in school and attended Duke University on a full scholarship. Away from her supportive home environment, everything “literally fell apart around my ears.” After Green married and had her first child, she mustered the strength to earn three degrees, and then was diagnosed with ADHD shortly after her youngest son was diagnosed. Green started the first urban CHADD chapter, in Chicago, after a suburban parent explained to her that “kids in the city don’t have ADHD. They [have] emotional and behavioral disturbances.” Before long, Green had joined the CHADD national board and become president.

Until Green started treating her ADHD with medication, she said, “I had no idea how good life could be.” But things fell apart again at perimenopause and menopause. Green told her story to illustrate that, for an adult with ADHD, life has “ups and downs and ins and outs. I never know when I wake up what life is going to be . . . and even when it looks good on the outside, some of us are really good at masking. Know that as you work with your adult clients and patients.”

Green, who is Black, discovered early “that the only way things were going to be changed was if we told our story.” But the stigma and the shame around ADHD reduce people’s willingness to do so, especially people from Black and Brown communities, she explained. Over her three decades in advocacy, Green has spoken with thousands of adults with ADHD. She remains “disappointed, maybe even a little disgusted,” that

“the real impact of untreated ADHD on both the individual and society as a whole” is still not taken as seriously as it should be. “Folks don’t get the trauma that’s involved, the heartache, the shame, the stigma . . . and how much we need you to support us to get through that.”

Treating Adult Patients as Partners

“Sometimes it feels like adults with ADHD are treated the way children with ADHD are treated by the clinicians and the researchers . . . like we can’t figure it out for ourselves, like we don’t need to be partners in decisions about our lives and treatment,” Green said. Adults with ADHD should be empowered and engaged as partners in their own treatment or that treatment will never succeed, she said. “Adults don’t need to be told what to do or what’s wrong with them. They need the tools and strategies to implement those tools, and they need knowledge and community support. They need to know all the ways they can manage their ADHD without bias,” she said. Green cited an adage from the disability movement, “Nothing about us without us,” and remarked that this workshop was the first time that adults living with ADHD had been asked for their opinions in a national scientific forum.

Green noted the important roles played by both CHADD and ADDA, the two leading organizations that advocate for people with ADHD. CHADD is vital, she said, but ADDA deals exclusively with adults, and “you need to take advantage of what both of them have to offer.” ADDA was started “because nobody else was giving adults with ADHD the respect and information that they needed.” ADDA does not hear enough from the research community, she continued. “You don’t ask enough questions,” she said. While it is important to ensure that CHADD works with the professional organizations on developing guidelines, “let’s also make sure that we give the adults access to those tools and guidelines, so they know what questions to ask when they go in . . . so they make those decisions.” Furthermore, “I heard a thousand times about the diversity we need,” in ADHD research, she added. “Most of the respondents were White, because that’s where you went to ask the questions.” She noted that ADDA has support groups for lesbian, gay, bisexual, transgender and queer persons, Black people, Asian people, and others. “We just need to ask the right questions and ask the right people,” she said.

There is one big lesson to be learned from pediatric ADHD treatment, said Green. “Who treats pediatric ADHD? Pediatricians.” In contrast, she said, “family practitioners, [primary care physicians], general practitioners are not the ones treating adult ADHD. . . . Something is wrong,” and it is a reason why adults do not get diagnosed.

Adult ADHD Remains a “Black Hole”

Green related some of the questions she encounters around adult ADHD. She is frequently asked whether it is real, “which is very sad. . . . Let me give you a day out of my life, and I’ll show you just how real it is.” Adults with ADHD “want to know what they can do to help themselves and where they can get support and find community.” Educators want to know what kind of accommodations they can make to help kids with ADHD succeed. Green noted that, like many clinicians, teachers receive no training on ADHD or guidance on what to do “when those kids land in front of them . . . and there’s at least one in every classroom.”

Far too often, said Green, “people still think of ADHD as a disorder of little hyperactive White boys.” Diagnosis of adults with ADHD remains “a big black hole for a lot of folks, and we need more answers,” she added.

Tension Between Stimulant Misuse and Patient Access to Care

Concerns about SUD and misuse can dominate the discussion of adult ADHD, said Green. “It’s prevalent to the point that all the attention is focused there, instead of on the everyday adult with ADHD that’s not trying to abuse [or divert] their Adderall. . . . Let’s put the attention where it needs to be,” she advised. “We talk a lot about misuse, but I want to remind you that misuse can also be caused by giving the wrong person the wrong medication.”

Diversion was such a concern when Green’s son went to college that he insisted on switching to a nonstimulant, but that medication adversely impacted his academic performance, she said. “None of us in the advocacy community want [diversion], because it reflects badly on us . . . but we need to have balance and not always assume the worst. . . . It’s almost like an assumption that adults with ADHD are going to misuse, [that] they all want to be addicts,” she said. In response to providers’ fears of a patient faking ADHD, Green countered, “it’s really hard to fake impairment.” Instead of relying on a checklist of what ADHD supposedly looks like, she said, “clinicians need to ask the right questions. . . . How many car accidents have you had? How many people have you run over? How many times have you lost your keys, and in what situations?”

Unmet Needs: Training and Community Engagement

The single most important change needed to improve care for adults with ADHD is training doctors and psychologists, said Green. When faced with the argument that “everybody thinks their [discipline] is the most important and wants to add more training” for physicians and nurse

practitioners in the field, she said, “I get that, nobody really has time. But we need to make time, because it’s important.” Furthermore, adult ADHD should be covered in the initial training of providers, not just as continuing education. Indeed, she added, “if we just train people to be more empathetic, to ask the right questions, that would make a huge difference to ADHD and all kinds of other issues.”

Green cited additional “30-year issues that are still there.” High on this list is the need to train “more clinicians that look like us, and sound like us, and understand us.” Another persistent problem is the lack of representation of minorities in clinical trials, which creates an inequitable treatment landscape, Green said. She recounted “parents who said to me, ‘I don’t care what they say about that medication being safe, they didn’t try it out on my kid, they didn’t try it out on Black kids’. . . . So we have to look at how we’re recruiting people . . . and what we can do differently to make sure that we are being inclusive.”

Lastly, Green noted that “stigma is still a thing . . . specifically for Black and Brown families. It’s not just the external stigma, it’s the internal family stigma that you have to deal with. It’s so complicated.” Green continues to advocate, she said, because “the only way that we can stop stigma is for people to stand up and talk about their experiences . . . and to share that information with others. It’s not an easy thing to do, it’s not. But that I think is the only way that we’re going to overcome it.”