I met with a delightful teen boy recently for a reassessment of his ADHD.He was in nearly perpetual motion, fidgeting, tapping his fingers on the arm rest, tapping his toes, and switching from one seat to another every 5-10 minutes or so. Although friendly and polite otherwise, he also interrupted frequently and I could tell that if I laughed too much at his jokes, I might lose him in a fit of giggles, non sequiturs, and additional jokes. It was hard because he was really funny!  Although delightful, the behaviors I described are signs of hyperactivity and impulsivity. He also had a long history of difficulties with inattention.

His symptoms were first noted when he was in kindergarten and he was subsequently diagnosed with ADHD in grade 3. There are three subtypes of ADHD: Combined presentation (significant inattention and hyperactivity/impulsivity), predominantly inattentive presentation (significant inattention but not significant hyperactivity/impulsivity) and predominantly hyperactive/impulsive presentation (the reverse pattern of predominantly inattentive).

There was no report available of his ADHD diagnosis. I saw him practically rolling around my office so I said with a slight wink in my voice, “I see that you were probably diagnosed with combined type ADHD?” His mother, a physician, replied with some surprise but non-defensively, “No, purely inattentive type.”

I said, “I see that your 11 year-old son also has ADHD. What is he like?” Not surprising to me, younger brother is a major fireball. And as the frame of reference, older brother is comparatively sedate. Also, older brother does not have a history of behavior problems. In many people’s mind, ADHD is synonymous with behavior problems like arguing, fighting, and having anger control problems. The truth is that a large proportion of children with ADHD do have behavior problems but what’s little known is that behavior problems are not part of the diagnostic criteria for ADHD.

ADHD is really complicated. It’s presentation varies widely from person to person as well as across development. People with ADHD display a different pattern of neuroanatomy as well as neorophysiology. When I am explaining ADHD to a science-minded teen, this is the time when I geek out and start drawing diagrams of presynaptic and postsynaptic neurons as well as relative differences in dopamine re-uptake in people with ADHD verses those without ADHD. I will spare you this part of the presentation. If ADHD, based on our current understanding, could be boiled down to one problem, it would be difficulty attending and persisting on tasks that are not interesting and/or fun.

ADHD also does not define a person. They have other strengths, weaknesses, skills, aptitudes, and personality attributes. Treatment response also varies from person to person. So, people with ADHD are not one person. They are all individuals. So why do I often hear people argue that someone definitely has or doesn’t have ADHD based on a limited frame of reference. And I’m not just talking about people with a vested interest in the diagnosis. I include casual observers, some extremely sophisticated, but who treat diagnosis and treatment like common knowledge. These folks also love to give advice and unsolicited opinions to the parents of my patients, to my patients, or to me if we’ve just met and I’ve answered the question about what I do for a living.

Does this sound familiar to any of you out there? It’s kind of like how everyone is becoming an expert on breast cancer. How they might tell you what kind of treatment you should get because they know someone who had breast cancer and it is assumed that all breast cancer treatment is equal. There may also be people who assume that they can predict another person’s breast cancer prognosis. There are assumptions about how people with cancer should look, act, or feel.

I know there are a lot of breast cancer patients who feel blamed for their disease. It’s not that I have not felt empathy for people with that view, it’s just that it didn’t resound for me because of my frame of reference. In my professional life, I work with children who are often blamed for their disease, even children who are in preschool. As a cancer patient, I had a much different experience. No one told me, “You need to stop having cancer right this minute!”

So the sense of being blamed did not fit into my immediate frame of reference after being diagnosed with breast cancer. But I am learning from all of you, from our shared and unique experiences. I am very thankful to be part of a community that “get’s it”. A community where it is okay for me to reveal faults and fears without being seen as wrong in some way. I appreciate your adopting a very wide frame of reference, one that accommodates personal choice, individuality, and the fact that breast cancers impact us but do not define us.