Brain on Fire
ADHD: Diagnosis, accommodation, and resilience
Posted Feb 16, 2017
Halfway through what were advertised as “Special Education Week” and February's “Autism and ADHD Month” (neither of which turned out to be real, but probably should be), a friend posted an important message on social media. Marge Everett Levy wrote, “When you have a ‘normal’ child, and they have good grades, you're happy. When they ‘behave,’ you're happy. But ‘normal’ is a joy, because, of course, it is a privilege.”
A privilege indeed.
According to the National Center for Education Statistics, “In 2013-14, the number of children and youth ages 3-21 receiving special education services was 6.5 million, or about 13 percent of all public school students. Among students receiving special education services, 35 percent had specific learning disabilities.”
Of those children, Levy said, “When you have a child with certain limits, that learning, even if minimal, arrives slowly or maybe never at all.” What’s her point? “Teach our children to be kind and accept all of their classmates. Children with special needs are no different than any other. They want what everyone else wants: to be accepted! Every child is unique and different and that's what makes the beauty of the world.”
A 2015 NewLifeOutlook article calls Attention-Deficit Hyperactivity Disorder (ADHD) one of the “best known but least understood” mental health conditions. Why well known? The piece states, “Reports claim that between five percent of children and 2.5 percent of adults meet the criteria for the diagnosis.” Translation: 1 in 20 children and 1 in 40 adults.
Another source, the Centers for Disease Control and Prevention (CDC), is cited in an article by Sanford Newmark, M.D., “A True ADHD Epidemic or an Epidemic of Overdiagnosis?” The CDC reported, “The prevalence of attention-deficit/hyperactivity disorder in children ages 4 to 17 years was 11 percent, with 6.4 million children diagnosed with ADHD and 4.2 million taking psychostimulants.”
As the title of his piece suggests, Dr. Newmark is asking some questions: “What is going on here? Have 11 percent of our children always had ADHD and we just missed it?” He doesn’t think so. In an alternative explanation to a seismic shift in the occurrence of ADHD, he offers his belief that the increase in diagnoses is driven by two factors.
- Inadequate evaluation combined with pressure for treatment
- Increase in demands being placed on kids, schools and families
Michael Lesser, M.D., Executive Director, Medical and Mental Health at RANE (Risk Assistance Network & Exchange), shares some of Dr. Newmark’s conclusions. He told me, “My concern has been that kids are many times diagnosed without an appropriate in-depth evaluation. Primary care doctors will medicate based on parent or teacher complaints without a referral to a mental health professional, at least for an initial evaluation to confirm the diagnosis or rule out another diagnosis.”
On the criteria for diagnosis, the ADHD Institute states, “The Diagnostic and Statistical Manual of Mental Disorders – 5th edition (DSM-5™), used in the USA and the rest of the world for the formal diagnosis of attention-deficit hyperactivity disorder (ADHD) … defines ADHD as a persistent pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development, has symptoms presenting in two or more settings (e.g. at home, school, or work; with friends or relatives; in other activities), and negatively impacts directly on social, academic or occupational functioning. Several symptoms must have been present before age 12 years.”
How does ADHD “present” to those bearing its effects?
Ned Hallowell, M.D., co-author of Driven to Distraction, answers the question, “So what’s it like to have it?” He says, “Some people say the so-called syndrome doesn’t even exist, but believe me, it does. Many metaphors come to mind to describe it. It’s like driving in the rain with bad windshield wipers. Everything is smudged and blurred and you’re speeding along, and it’s really frustrating not being able to see very well. Or it’s like listening to a radio station with a lot of static and you have to strain to hear what’s going on. Or, it’s like trying to build a house of cards in a dust storm. You have to build a structure to protect yourself from the wind before you can even start on the cards.
“In other ways it’s like being supercharged all the time. You get one idea and you have to act on it, and then, what do you know, but you’ve got another idea before you’ve finished up with the first one, and so you go for that one, but of course a third idea intercepts the second, and you just have to follow that one, and pretty soon people are calling you disorganized and impulsive and all sorts of impolite words that miss the point completely. Because you’re trying really hard. It’s just that you have all these invisible vectors pulling you this way and that, which makes it really hard to stay on task. Plus, you’re spilling over all the time. You’re drumming your fingers, tapping your feet, humming a song, looking here, looking there, stretching, doodling, and people think you’re not paying attention or that you’re not interested, but all you’re doing is spilling over so that you can pay attention.”
What do the kids say?
Sixteen-year-old Alex, a high school sophomore from south Florida, told me he was diagnosed between ages 9 and 11 “when I couldn’t concentrate at all in class and had trouble working on assignments. Still today in school I have trouble with being severely distracted and unable to keep up with the class.”
Aggie, 18, a high school senior in the suburbs of New York City, pegs her ADHD diagnosis at age 12, though she noticed her own struggle to stay seated and focused long before. She tells me, “Every day I need to constantly remind myself to ‘calm down.’ I have this jumpy personality that sometimes looks like me being happy but sometimes can appear and feel like uncontrollable energy that has nowhere to go and nowhere to turn.”
And Rowan, 18, a first-year college student, describes his struggles with attention deficits this way: “I truly and genuinely love to learn, and when I can manage to get myself organized and on top of my work, I take great pleasure in my classes and assignments. I’ve always wanted to challenge myself, and although for the most part I enjoy the challenge, I sometimes can take on too much without realizing it. I don’t know if I’m a top of the class student in everything I do, but I try my hardest to get the work done and I am proud when I can do that.”
What Aggie and Rowan are describing is a typical approach to addressing learning disorders (or “differences”): Accommodation. In other words, finding workarounds that ameliorate the condition. Alex also “encourages” himself to stay concentrated on the task at hand. And Aggie says, “Once I begin wandering, it is pretty hard for me to turn back. I have to just take a deep breath and focus on the teacher, or stop shaking my leg, when I am feeling hyper.” She also cites the calming effects of exercise in taming excessive energy.
Of course, in addition to accommodating ADHD there are also ways to remediate it. Perhaps the most common remediation comes in the form of medication, including the psychostimulants noted by the CDC. Alex tried those to negative effect. Both Aggie and Rowan have found some relief in pharmacology. Regardless, their use is, in some circles, suspect.
Newer modalities of treatment include neurofeedback, which more than six years ago was discussed by Katherine Ellison in her New York Times article “Neurofeedback Gains Popularity and Lab Attention.” Describing the practice, she says, “You sit in a chair, facing a computer screen, while a clinician sticks electrodes to your scalp with a viscous goop that takes days to wash out of your hair. Wires from the sensors connect to a computer programmed to respond to your brain’s activity.
“Try to relax and focus. If your brain behaves as desired, you’ll be encouraged with soothing sounds and visual treats, like images of exploding stars or a flowering field. If not, you’ll get silence, a darkening screen and wilting flora.
“This is neurofeedback, a kind of biofeedback for the brain, which practitioners say can address a host of neurological ills – among them attention deficit hyperactivity disorder, autism, depression and anxiety – by allowing patients to alter their own brain waves through practice and repetition.”
Ellison goes on to note the controversy then swirling around the treatment, offering varying viewpoints from practitioners and patients alike.
Also discussing the debate is Ed Hamlin, Ph.D., BCN, Clinical Director at the Institute for Applied Neuroscience, who told me, “I am thoroughly convinced that both general arousal and attention are amenable to neurofeedback training and routinely employ it for these purposes across a wide variety of conditions, including ADHD. The trick, however, for improved outcomes involves incorporating it into a skills training approach where the individual learns to apply techniques on one’s own. The feedback in training lets them know how they are doing and rewards them when they are doing better. Neurofeedback is not a means in itself but is an excellent tool for learning new mental skills. Good outcomes from this approach to treatment will generally include the application of coaching, counseling, and motivating skills. In this context, neurofeedback becomes the best tool I have found for improving self-regulation and strengthening control over attention.”
Michael Cohen, Director of Neurotechnology and President of the Center for Brain in Palm Beach County, Florida, explained, “When you have ADHD, how do you teach your brain to sustain attention, to be less distracted, or to control behavior? Neurofeedback is like a high tech gym. It literally allows you to strengthen circuits of the brain that help to manage attention and gain self-control. Like exercise, it almost always helps. But for some it takes a lot longer to get their ADHD in shape. It's easy to quit the gym too soon.”
I, too, battle inattention and hyperactivity. Sometimes I feel my brain is on fire. But – like Alex, Aggie and Rowan – I have, over more years than they, learned to douse the flames, in my case both coping (through organization, orderliness and exercise) and channeling (my energy). In fact, I believe I have, for the most part, successfully flipped my “disorder” into an advantage.
Wait, can ADHD be a gift?
Hallowell suggests yes, stating, “Often these people are highly imaginative and intuitive. They have a ‘feel’ for things, a way of seeing right into the heart of matters while others have to reason their way along methodically. This is the person who can’t explain how he thought of the solution, or where the idea for the story came from, or why suddenly he produced such a painting, or how he knew the short cut to the answer, but all he can say is he just knew it, he could feel it. This is the man or woman who makes million-dollar deals in a catnap and pulls them off the next day. This is the child who, having been reprimanded for blurting something out, is then praised for having blurted out something brilliant. These are the people who learn and know and do and go by touch and feel. These people can feel a lot. In places where most of us are blind they can, if not see the light, at least feel the light, and they can produce answers apparently out of the dark.”
Indeed, those succeeding with attention deficits include Sir Richard Branson, Terry Bradshaw, Jim Carrey, Howie Mandel, Michael Phelps, Will Smith and Justin Timberlake. So, too, (it is believed) did Ludwig van Beethoven, Thomas Edison, Benjamin Franklin, and Wolfgang Mozart.
Reflecting on his initial receipt of the DSM-5, the Reverend Ken Beldon offers some important perspectives on the role of diagnosis, accommodation and resilience.
"Each person is more than a diagnosis, having one’s own irreducible experience. These categories and symptoms are pointers into the complexity of identity.
"There are so many things that can and do go wrong with us and cause difficulty in life. Yet, it really is amazing how the vast majority of us find a way through the day. Resilience is totally a thing. Maybe the truest thing. Wonderfully and fearfully made, we are."
Especially our children.
Ellison, K. (2010). Neurofeedback gains popularity and lab attention. The New York Times. October 6, 2010. http://www.nytimes.com/2010/10/05/health/05neurofeedback.html (13 Feb. 2017).
Goodin, K. (2011). Famous people with ADHD. Parenting. http://www.parenting.com/gallery/famous-people-with-add-or-adhd (13 Feb. 2017).
Hallowell, E. (2012). What’s it like to have ADHD? The Huffington Post. June 27, 2012. http://www.drhallowell.com/whats-it-like-to-have-adhd/ (13 Feb. 2017).
IES. (2016). Children and youth with disabilities. National Center for Education Statistics. May 2016. Institute for Education Sciences. https://nces.ed.gov/programs/coe/indicator_cgg.asp (13 Feb. 2017).
Newmark, S. (2015). A true ADHD epidemic or an epidemic of diagnosis? Psychiatric Advisor. July 28, 2016. http://www.psychiatryadvisor.com/adhd/a-true-adhd-epidemic-or-an-epidemic-of-overdiagnosis/article/429034/ (13 Feb. 2017).
Patterson, E. (2015). Recognize the symptoms of ADHD for proper diagnosis and treatment. Newlifeoutlook. April 2, 2015. http://adhd.newlifeoutlook.com/symptoms-of-adhd/ (13 Feb. 2017).
Shire. (2017). Diagnostic and statistical manual of mental disorders – 5th edition (DSM-5TM). ADHD Institute. http://www.adhd-institute.com/assessment-diagnosis/diagnosis/dsm-5tm/ (13 Feb. 2017).