ADHD in Adulthood: Personal Stories and the Need for Evolving Guidelines

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From Character Flaws to Neurodivergence: Jia Sung’s Journey to ADHD Diagnosis

As a child, Jia Sung faced challenges in school. Her report cards often included comments such as “intelligent but doesn’t apply herself” or “has a really hard time focusing,” she recalled. These early indications of ADHD were overlooked and interpreted as laziness or a lack of motivation (1^✔ ✔Trusted Source
Why Is It Still So Hard To Diagnose Adult ADHD?

Go to source). Later in her late 20s, a friend of Sung’s was diagnosed with ADHD and recommended that she get screened as well.

“Part of me was a little resistant to it. The things that I was told were associated with ADHD, I had associated with character flaws,” Sung said. “It took me a couple years of sitting with this possibility to act on it and seek diagnosis.”

Now 31, Sung, an artist based in New York, has spent the past year adapting to her new diagnosis and exploring various management options.

“This is the first time I’ve considered myself through the framework of neurodivergence, and that has been really liberating,” she said. “I can go from thinking of myself as an extremely dysfunctional neurotypical person who just sucks at being neurotypical to like, ‘Oh, right. There’s a way to make sense of how I am, and there are ways to help me cope better.’”

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ADHD in Adults: A Hidden Challenge

ADHD is a developmental disorder marked by persistent symptoms of inattention, hyperactivity, and impulsivity that begin in childhood. Individuals with ADHD often identify as neurodivergent, as their thinking and functioning differ from the majority of people.

For many years, researchers believed that ADHD primarily impacted children, with most eventually overcoming it. However, clinicians now understand that the condition frequently persists into adulthood. In some instances, adults may remain undiagnosed for years, having never received proper evaluation or treatment during their childhood.

Approximately 6% of adults in the U.S. have ADHD, making it the second most prevalent psychiatric disorder in adults, following major depressive disorders. According to a recent report from the Centers for Disease Control and Prevention (CDC), over half of adults are diagnosed with ADHD after turning 18.

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The Need for Adult ADHD Guidelines in the U.S.

Although the understanding of adult ADHD has evolved significantly in recent years, clinical practices in the U.S. have not yet kept pace.

About 40 countries have established diagnostic guidelines for adult ADHD, but the U.S. has not. Most healthcare providers lack formal training in diagnosing and treating adult ADHD, and there are no clinical guidelines available to assist them.

“Imagine going to your family doctor who says, ‘I’m pretty good at helping with cardiac problems and hypertension, but diabetes? I didn’t get that in med school, so I can’t help you.’ That’s an equivalence to what we’re looking at here,” said Russell Ramsay, Ph.D., a psychologist who co-founded the Adult ADHD Treatment and Research Program at the University of Pennsylvania.

A coalition of ADHD experts is about to release guidelines aimed at helping clinicians differentiate ADHD from other prevalent psychiatric conditions in adults and to ensure that patients receive appropriate treatment.

Common Problems for Adults With ADHD

• Difficulty staying focused
• Losing or changing jobs frequently
• Struggling to manage everyday responsibilities, such as completing chores and paying bills.
• Forgetting important things or deadlines
• Having relationship problems because of not completing tasks
• Chronically feeling frustrated, guilty, or stressed about failing to accomplish goals

Recognizing Adult ADHD: Limitations of Current Diagnostic Criteria

Diagnosing ADHD in adults can be difficult.

For starters, ADHD wasn’t regarded as a legitimate diagnosis until fairly recently. When it was first included in the second edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-II) in 1968, the definition stated that the disorder "usually diminishes in adolescence." It wasn’t until the publication of the DSM-IV in 1994 that ADHD was recognized as potentially extending into adulthood. Even then, the criteria were primarily based on studies involving only school-aged children.

ADHD is classified as a neurodevelopmental disorder, and the current DSM states that symptoms should be noticeable by age 12. However, Ramsay pointed out that this guideline could overlook some teenagers. Research suggests that in certain individuals, ADHD symptoms might not appear until around age 16, often after puberty and when they begin to face greater responsibilities.

Understanding the Symptoms of ADHD in Adults

When assessing an adult for ADHD, clinicians might consult family members, a spouse, or friends to determine if symptoms were evident during childhood. The diagnostic process usually includes interviews to gather information about the patient’s symptoms, a behavior rating scale, and a physical examination.

ADHD symptoms can evolve as a person matures and their behaviors become more established. For example, a child who was frequently distracted may struggle with tasks that require prolonged focus as an adult. Similarly, children who were hyperactive in school might feel restless and bored during work meetings in adulthood.

Adding to the complexity, many adult psychiatric conditions have symptoms that overlap with ADHD, according to Peter Jensen, M.D., an ADHD expert involved in developing the guidelines, during a webinar hosted by Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD).

Individuals with anxiety, substance use disorder, and bipolar disorder frequently exhibit signs of inattentiveness and struggle with task completion—key symptoms of ADHD. According to Jensen, mental health professionals can sometimes become sidetracked by these other conditions. “There’s a lot of area for misunderstanding, even among healthcare providers. They might say, ‘How could you have ADHD? You graduated from law school.’ They don’t totally get it,” Jensen said.

A Forthcoming Set of National Clinical Guidelines for Adult ADHD

This is where the guidelines play a crucial role. A committee established by the American Professional Society of ADHD and Related Disorders (APSARD) aims to release a draft for public feedback by the end of the year.

The final guidelines for treating adults with ADHD will offer recommendations on initial treatment options, optimal medication prescribing practices, and methods for monitoring potential side effects, according to Lenard Adler, M.D., director of the Adult ADHD Program at New York University and a member of the executive committee for the APSARD guidelines.

“[The guidelines will] provide guardrails for how to establish a diagnosis and treatment plan for a patient,” Adler said. “Our hope is that these are going to be used by all clinicians who are treating patients with adult ADHD. Specialists like me cannot treat all of the individuals with adult ADHD.”

Getting those guidelines right is crucial. Research indicates that untreated ADHD can result in a shorter lifespan and increased risk of early death from issues like substance use, obesity, and heart disease. Additionally, these guidelines could assist insurance companies in properly covering mental health care and support advocacy efforts by ADHD organizations for improved access to medications.

From Doubt to Diagnosis: Luke Solomon’s ADHD Journey

Luke Solomon, 33, suspected he had ADHD for a decade before receiving a diagnosis. During middle school, he struggled to focus and found himself daydreaming more than his peers. When he inquired with his doctor about whether ADHD could explain his inattentiveness, his concerns were dismissed.

At the time, there was “a lot of stigma around ADHD,” he added. “Everybody was diagnosing their kids with it. Doctors were going crazy, giving out Ritalin, or so it seemed.”

Solomon, who lives in New York City, recalled a 2000 episode of “South Park” that depicted kids who were prescribed ADHD medications, putting them in zombie-like trances.

In his fifth year of college, Solomon was assigned a class project on ADHD medication. As he researched the diagnostic criteria, he recognized that they matched his experiences perfectly. This prompted him to schedule an appointment with a psychiatrist.

After that appointment, he left with a prescription for Adderall and took his first dose before a two-and-a-half-hour physics lecture.

“I remember calling my dad after that lecture, having five pages of notes, and I said, ‘Taking this medication is as eye-opening as the first time that I put on glasses.’ It was that profound,” Solomon said.

In the decade that followed, Solomon reported feeling more motivated than he had during his adolescence and discovered new coping strategies. He attaches AirTags to important items he tends to misplace and takes care of certain household chores while his partner manages the bills.

“Everyone has had a moment where they couldn’t pay attention in class. That doesn’t necessarily mean that they have ADHD. The moment that I knew that I had it was when I wasn’t even able to pay attention to the things that I knew I enjoyed.” said Soloman.

How Major Life Events Highlight ADHD Symptoms

Adler noted that many adults pursue a diagnosis when they experience significant life changes that involve increased responsibilities or adapting to new situations, such as moving away for college, getting married, starting a family, or receiving a major promotion at work. Additionally, parents may begin to recognize signs of ADHD in themselves while taking their child for an evaluation.

“ADHD symptoms don’t occur in a vacuum. They occur in the context of the individual’s life. And sometimes the symptoms may have been there but are brought to the fore by a change in the demands in the individual’s life,” Adler said.

The Pandemic’s Influence on ADHD Care

The COVID-19 pandemic brought significant life changes for many. Lockdowns disrupted work and social routines, keeping people at home. Some students who had previously performed well in school began to struggle without the structure of in-person classes. Meanwhile, adults working from home often found it challenging to stay productive amid family distractions.

“The pandemic was a watershed moment,” Ramsay said.

Simultaneously, the pandemic pushed mental health providers to adopt telemedicine, allowing them to offer services to individuals out of state. With the rising demand for mental health support, ADHD specialists found themselves overwhelmed with clients seeking assistance.

Telehealth companies stepped in to address the growing need for mental health services. However, some online mental health providers, such as Cerebral and Done, faced criticism for prescribing addictive stimulant medications to patients following brief 30-minute virtual consultations. A 2022 Wall Street Journal article indicated that the rise of telehealth companies and concerns about inappropriate prescribing were key factors behind APSARD’s decision to develop new guidelines.

The Positive and Negative Impact of Social Media on ADHD Awareness

During the pandemic, many Americans increased their time on social media platforms like TikTok and Instagram. In the years that followed, there has been a surge of posts aimed at demystifying ADHD and other mental health conditions.

A 2022 study revealed that 79% of the top 100 TikTok videos about ADHD were either misleading or based solely on personal experiences, with only 11% created by healthcare professionals. Videos focusing on first-person experiences garnered the highest number of likes and views.

Ramsay said that personal story videos tend to be some of the least reliable content. But they’re attractive to people, he said, because they’re affirming. “It’s a connection with somebody, albeit virtually.”

Despite the prevalence of non-credible content on social media, Ramsay suggested that the heightened awareness of ADHD is likely a "net positive." When individuals identify with ADHD symptoms or experiences shared online, they may be more inclined to take an online ADHD screening test.

Ramsay noted that these tests often produce many false positives, but they can also help identify individuals who genuinely have ADHD but haven’t previously recognized it. This may prompt some people to seek a more thorough diagnostic evaluation from a clinician. Even if they don’t receive a diagnosis, such conversations can assist patients in identifying behaviors they wish to change and exploring therapy or other treatment options to achieve their goals.

“Some of the evaluations I’m most proud of are times when I’ve been able to sit with somebody and tell them, ‘Here’s why it’s not ADHD, but here’s what can be helpful,’” Ramsay said.

Why Adult ADHD Guidelines Matter

ADHD has traditionally been seen as a disorder characterized by inattention and hyperactivity. However, there is a growing consensus among researchers that it should be viewed primarily as a disorder of executive function, which includes skills such as self-control, planning, and organization.

Ramsay stated that the current diagnostic criteria are "not wrong, but incomplete." Research indicates that emotional dysregulation—a symptom not included in the DSM for ADHD—can be just as significant a factor in the condition as impulsivity, inattention, and hyperactivity.

Incorporating additional symptoms into the DSM and diagnostic guidelines could lead to better outcomes for women, who often present ADHD differently than men. While boys typically exhibit hyperactivity and impulsivity, girls are more likely to show symptoms of depression and anxiety. As a result, girls expressing sadness and emotional distress may be misdiagnosed, which can leave them without the necessary support during crucial developmental years.

One girl is diagnosed with ADHD for every four boys. However, in adulthood, this ratio becomes more balanced, with one woman diagnosed for every man.

The Emotional Landscape of Late ADHD Diagnosis

Jia Sung, 31, recalled, “I actually had a very emotional conversation with my mom after I was diagnosed, where she actually apologized to me, and she was like, ‘I’m so sorry. I didn’t know. I really thought ADHD was like little boys jumping around.’”

“I’ve processed a lot of grief around the lack of support that I belatedly realized I had as a troubled student, as a really depressed teenager. There’s a backlog of grief around that,” Sung said.

Receiving a diagnosis later in life can evoke mixed feelings about one’s identity and relationships. Both Sung and Solomon shared that their parents expressed regret for not recognizing the signs of ADHD during their childhood.

Growing public awareness of ADHD, particularly among women and marginalized groups, is leading more adults to seek a diagnosis than ever before. As stigma surrounding ADHD decreases and healthcare providers become more adept at evaluating and treating the condition, this trend is likely to persist.

“I feel an incredible compassion for the other people who are experiencing late diagnosis and the emotions that can bring up,” Sung said. “It can be scary to feel like your understanding of your identity is shifting when it should already be set in adulthood. But there’s also something nice about that fluidity and the different lenses of understanding yourself.”

Reference:

1. Why Is It Still So Hard To Diagnose Adult ADHD? - (https://www.verywellhealth.com/diagnosing-adult-adhd-challenges-8726866)

Source-Medindia