This is the first blog in this series. To read the second installment, go to "Bringing the ADHD Debate into Sharper Focus, Part 2 -- A Matter of Public Health."
There is a critically important conversation missing from the Op-Ed pages of our leading news institutions -- the proper diagnosis and treatment of ADHD is a matter of public health and safety.
ADHD is a complex neurobiological disorder, and it has become a lightning rod for debate in recent years. A complicated condition for both children and adults, it is a significant problem facing millions of families across the globe. Yet public discourse about this complex condition seems to mirror the challenges of the condition itself. Rather than focus on the societal implications or the personal ramifications for individuals, public debate continues to distract attention from the very real public health implications of undiagnosed and/or unmanaged ADHD.
Like a teacher might do for a distracted child, it's time to redirect and refocus the ADHD debate.
Families Are in Distress
Brain science research over the last decade has brought extraordinary advances in understanding of ADHD and the ability to better diagnose the disorder in children and adults. Yet in one article after another, public debate all too often digresses into an emotional frenzy of moralizing around presumed over-diagnosis or legitimacy of prescribing medication.
As Maggie Koerth-Baker reluctantly acknowledged in the New York Times in October 2013, there is "compelling evidence that [ADHD] has a strong genetic basis." What would result if we stopped finger pointing for a moment and acknowledged that families are in distress? What if public discourse were to take into consideration the dramatic impact that undiagnosed and unmanaged ADHD has on families, relationships and society? How could that change the course of treatment for this complex disorder?
Many parents spend years searching for answers before they finally land on an ADHD diagnosis -- only to find the legitimacy of that diagnosis, and their decision-making as parents, called into question. What's the recourse available to those parents? They've witnessed their child's frustration and felt helpless to do anything about it. They've seen their child take two hours to complete 10 minutes of homework, or struggled with their child's inability to sit still for even two minutes at the family dinner table, or cried as their child has been unable to manage emotions or impulsivity in a healthy way.
Those parents know that something is awry, even when they might not know what to call it or what to do about. Are we going to continue to shame them into believing that they are just not good enough as parents? Or are we ready to offer compassion, hope and a solution-oriented mindset?
The Challenges of Accurate Diagnosis
According to the DSM 5, ADHD is properly diagnosed when the challenges that an individual faces significantly interfere with more than one aspect of life. Since ADHD is not a character trait or a tendency, but is marked in part by an individual's inability to produce desired results despite the intention (and sometimes the effort) to do so, it can be quite tricky to diagnose. As ADHDers, we know what we're "supposed" to do, but we can't quite figure out how to get it done. From our perspective, it can be absolutely maddening.
The process a practitioner must undergo to discover ADHD can be equally as challenging. ADHD is similar to other diagnoses that must be determined by process of elimination, such as Fibromyalgia and Irritable Bowel Syndrome. There is not yet a physiological evaluation available, though research suggests clear biological differences in the ADHD brain. This is where art and science merge in the practice of medicine. We have to trust the physicians who are synthesizing a great deal of data to make the best medical determination possible.
As a parent of three children diagnosed with ADHD by thorough evaluations conducted by PhDs, and adult diagnoses for my husband and myself (identified with similar rigor), I am the mother in an ADHD family of five. Undiagnosed, untreated and unmanaged, ADHD nearly destroyed my family and my marriage. Thankfully, we had the resources to undergo thorough diagnostic evaluation, respond with a range of treatments and take a conscious approach to management. But not every family is as fortunate as we are. Diagnosis can be difficult and expensive, and a comprehensive course of action after diagnosis is far from well-defined.
It's a catch 22, really. There is a public outcry against "overdiagnosis" of ADHD, but the rigor required for thorough diagnosis is extensive, expensive and not well supported by our public health system. So what are we to do? Do we impose more rigorous standards, limiting access and potentially missing diagnoses for families that are suffering greatly? Which is a greater public health risk: missing critical diagnosis for a child at risk or mis-diagnosing a child who is clearly facing challenges?
Certainly, there is still more variability in the diagnostic process than is optimal. Likely, there are mis-diagnoses of ADHD (just as there are missed diagnoses for other medical conditions). But we cannot allow that to distract us or disregard the serious challenges facing families. Let's call for improved training for medical practitioners and educators, for more thorough care to be taken in the diagnostic process. Let's call for insurance companies to pay for the rigor involved with thorough evaluation. Let's look to what can be done to improve the process with the goal of supporting families with improved information, guidance and support.