A Different Approach to Adult ADHD
In 2009, I diagnosed my husband with adult ADHD using an online questionnaire. It seemed like a straightforward process — when I had sought psychiatric care for depression, I highlighted my symptoms in the latest edition of the Diagnostic and Statistical Manual for my doctor. Depressed mood? Check. Fatigue or loss of energy? Check. Feelings of worthlessness or excessive guilt? Every day. I figured an adult ADHD diagnosis would be just as simple.
Six years and as many psychiatrists later, I now understand that adult ADHD is among the most difficult conditions to diagnose. Unfortunately, the mental health system available to us was ill-equipped to address ADHD’s inherent diagnostic challenges. With each new psychiatrist, he was just subjected to another form of that online questionnaire: easily distracted? Check. Difficulty organizing tasks? Check. Forgetful? All the time. Having checked off enough boxes, each psychiatrist confirmed the adult ADHD diagnosis within minutes, prescribed a new cocktail of medication (each with its unique set of debilitating side effects), and scheduled him for fifteen minute long medication management appointments every 4–6 weeks.
I thought this approach to mental health was standard. Besides, I was so concerned with just being able to find a mental healthcare provider who accepted our insurance and was taking new patients, I felt like I didn’t have the luxury of critiquing the quality of care he ultimately received. I was resigned to the fact that he was lucky to receive care at all.
It wasn’t until we found his current psychiatrist that I realized just how deeply misguided we had been in the approach to ADD diagnosis and treatment. This time, there were no checklists. Instead, she listened to him tell his story for a total of two and half hours over the course of two weeks. She listened to the traumas he had experienced in childhood. What it was like to immigrate from Africa to the United States, and the racism and discrimination that came with it. She listened to the story of the five psychiatrists who came before her, the medications he had tried and their grueling side effects. She listened, asked more questions, and listened some more. Then she made a diagnosis and worked with him to devise a treatment plan.
It was a revelation. We had finally found a provider who thought outside the box, and looked at him as a whole person, with his own unique history, identity and lived experience. We found someone willing to listen, and work with him as an equal. I was at once relieved for having found such thoughtful and respectful care, grateful that we could afford it, and furious that we had suffered so long without it. We were an educated couple with commercial insurance in a major metropolitan area. If we had such a difficult time finding decent mental healthcare, I couldn’t imagine how many people without these advantages were suffering from untreated, incorrectly diagnosed or poorly treated mental illness, too.
So I did what I always do when I get angry. I started writing. I set out to create the resource I wish we had had six years ago, which could have helped prepare us for the arduous journey ahead — especially when it came to obtaining a thorough diagnostic assessment.
The first thing I discovered was how relatively little research has been conducted on ADHD among adults, since it has historically been seen as a “childhood-limited disorder.” Now, researchers report that many adults with ADHD “present for diagnosis and treatment after having suffered with the disorder, untreated, for the majority of their lives.” I also learned that my husband is hardly alone: a review of prevalence data published in 2009 found that between 6–9 percent of children and adolescents have ADHD in the U.S., as well as 3–5 percent of adults. If this is accurate, then at least 2.2 million of the 74 million adults in the U.S. currently live with ADHD.
I then discovered just how complex an ADHD diagnosis can be. Several physical conditions ranging from seizure disorders to negative drug side effects to chronic sleep deprivation can mimic ADHD symptoms. Common co-morbidities like mood, anxiety and substance use disorders can also make an accurate ADHD diagnosis extremely challenging. How is one to determine where ADHD begins and another condition ends? (Hint: a simple questionnaire is not likely to help).
I dug deeper. As if the long list of confounding conditions didn’t present enough challenges, I learned how gender can influence ADD diagnosis. Although most ADHD research has historically focused on boys, we now know that ADHD affects both males and females but may manifest in different ways. While girls may exhibit more inattentiveness, boys tend to exhibit more hyperactivity and impulsivity, which often lead to an ADHD diagnosis. Girls, meanwhile, may be overlooked because their symptoms don’t look like ADHD symptoms in boys. Dr. Patricia Quinn’s research has found that girls with ADHD are 5.4 times more likely to be diagnosed with major depression compared to boys, increasing the likelihood that girls’ ADHD will be misdiagnosed and inadequately treated.
I also gained a greater appreciation for the ways in which race, ethnicity and culture influence mental health diagnosis. Overall, racial minorities in the U.S. face a disproportionate risk of mental illness and are less likely to receive appropriate care and treatment. These disparities persist in regard to ADHD. Even though actual prevalence is probably similar across racial and ethnic groups, ADHD diagnoses are higher among non-Hispanic Whites than for minorities. Psychologists argue that these discrepancies in ADHD diagnoses may be explained in part by cultural factors that influence parents’ view of their children’s behavior, but racial minorities may also face barriers to diagnosis and treatment due to a lack of health insurance, the high cost of care, and stigma against mental illness.
After listening to a TED talk by Dr. Nadine Burke Harris, I learned a history of childhood trauma as rated by the Adverse Childhood Events or ACE scale, also increases one’s likelihood of developing mental health disorders. Developmental psychologists have found that the part of the brain that controls “executive function,” including judgment, planning and self-control, seems to be most affected by ACEs — and is also the part most associated with ADHD symptoms. It therefore was not surprising to learn that children’s reactions to trauma are sometimes misdiagnosed as ADHD. While research on trauma and adult ADHD is limited, a study published in 2008 found that “adverse events showed a small but positive correlation with current ADHD severity” among adults.
I sadly don’t expect access to mental health care to dramatically increase under our current healthcare system, nor do I anticipate that mental healthcare will move beyond standard questionnaires and checklists to diagnose complex conditions like ADHD. I do, however, hope that if more people have reliable, accessible information about mental health and the many factors that influence diagnosis, they will be more prepared to ask informed questions, challenge stereotypes, and advocate for themselves during a clinical encounter. After all, as patients, we know ourselves the best. And we need to feel empowered to tell our story.
Elizabeth Arend is the creator of Adult ADD Central, which provides up-to-date, evidence-based information so adults with ADD and the people who care about them can better understand the factors that influence mental health and access the resources they need.