ADHD goes beyond inattention and hyperactivity. It affects emotions, relationships, careers, and daily life in ways that many, even those living with ADHD, may not fully understand.
This episode of our ADHD podcast series covers the realities of experiencing neurodivergence, including delayed diagnoses, difficulties with emotional dysregulation, coping strategies and the importance of a clinician’s role in a patient's ADHD care journey.
The conversation between Duane Gordon, President of ADDA, Helen Turnbull, Evelyn Polk-Green, Ex President of ADDA, and Katie Hathaway, M.S, BCBA, is one of honesty, humor, and insight, offering a deeper understanding of ADHD that textbooks often miss.
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The road to diagnosis: Why recognizing ADHD is often delayed
For many adults with ADHD, their journey doesn’t begin with a childhood diagnosis. It often comes after years of unexplained struggles or sometimes through the diagnosis of a family member or friend.
Duane Gordon explains how his own diagnosis came during the diagnosis of his daughter. “During my daughter’s diagnosis, my wife was like, ‘I don’t know about our daughter, but this is you’ and I was in my mid 30s.”
Late diagnosis is especially common in women. Most women with ADHD don't get diagnosed until their late 30s or early 40s. “I spent my teens and 20s believing that I was just weird, and coming into my 30s and getting that diagnosis was a real savior,” says Helen Turnbull.
These experiences highlight a significant gap in ADHD care, especially for individuals who don’t fit the traditional stereotype of a ‘hyperactive ADHD child’. Many women and people of color are misdiagnosed with anxiety or depression before they receive the right diagnosis.
The role of emotional dysregulation
ADHD is most commonly linked to attention and impulsivity, but emotional dysregulation is a significant symptom that affects behaviors, despite seldom being addressed in clinical settings.
Evelyn Polk-Green highlights how this is one symptom nobody ever talks about. She mentions instances of blow ups with her children as a result of not being able to regulate emotions, and recognizing this later in life, as an ADHD symptom. “One of the first lessons that I think we taught each other, after understanding ‘the why’ behind emotional dysregulation, was how to apologize to each other after having one of these blow ups.”
For some, this can manifest itself into perfectionism as a coping mechanism. Helen notes how “if you’re afraid of emotional dysregulation, that can turn into perfectionism, burning yourself out because you’re terrified of failure.” Understanding how ADHD emotions manifest is crucial for both patients, and the clinicians supporting them.
Building effective strategies: The power of routine and community support
Helen also commented on how she absolutely hates routine, but it is vital to her maintaining consistency throughout the day. Finding the right coping strategies can be life changing and make day-to-day activities less challenging.
Duane explains how, “not only is routine important, but how you build that routine. My boss knew, she’d say, ‘I want your morning brain for this task, not your afternoon brain.’ And understanding that aspect of what time works best for what task is crucial.”
Beyond routines, having the right kind of support and understanding plays a vital role in fostering self-acceptance.
“Finding a group of people that can support you, even before I was diagnosed, helped me understand what was going on,” says Evelyn. She adds how it’s always the first thing she advises people with ADHD to do - find a group of people who can support you on your journey.
The role of clinicians in ADHD care
One of the most striking takeaways from this discussion is how often ADHD patients hold back key information during clinical visits.
Duane highlights an instance of how, when he goes to his doctor’s visits, he’s more likely to hold back negative information. “I don’t tell my doctor that I blew up at my boss and got fired again, it’s embarrassing. And those are the real costs of living with ADHD.”
For women and people of color, being believed by clinicians is an additional challenge. Evelyn emphasizes how “almost every (Black and Brown woman) I know has been diagnosed with depression or anxiety. ADHD is the underlying cause, but clinicians don’t believe them.”
To provide meaningful support, clinicians must ask deeper questions, listen without bias, and believe their patients’ experiences. With the rise of virtual care, there is an opportunity for clinicians to better understand the lived experience of ADHD. The time saved by virtual appointments can be utilized asking questions and understanding patient stories better.
