Medical Misdiagnosis in the Gifted
Does the child who has the clothes in her closet arranged by color have OCD (Obsessive Compulsive Disorder) or Autism, or is that level of organization simply a manifestation of a quirk of her high intelligence, i.e. attention to detail and rational structure?
Does the child who notices everything have ADHD (Attention Deficit Hyperactivity Disorder), or is his flitting attention from this to that simply a manifestation of a quirk of his high intelligence, i.e. a brain that is extra-in-tune with the world around him?
Does the child who worries frequently have an anxiety disorder, or is that angst simply a manifestation of a quirk of her high intelligence, i.e. idealism coupled with an earlier-than-most grappling with moral, spiritual, and philosophical issues?
Does the child who exhibits wide-ranging high emotionality have a mood disorder, or is that emotional roller-coaster ride simply a manifestation of the intensity, sensitivity, and asynchrony that often come with giftedness? Or could it even be an expression of the child's frustration over a lack of academic challenge?
As information from the organization SENG (Supporting Emotional Needs of the Gifted) points out, "behaviors directly associated with giftedness may mimic medical or mental health disorders." While it is entirely possible for gifted children, just like all children, to be susceptible to and diagnosed with the wide array of medical and mental health disorders that exist, there have also been documented cases of gifted children being misdiagnosed with a medical or mental health disorder because their gifted traits were misinterpreted by a medical professional who lacked training in and information about quirks and characteristics of giftedness. As demonstrated in my examples above, the traits and characteristics of giftedness "overlap" the criteria and characteristics of various medical and mental health disorders. "So which is it?" becomes the significant question. While yes, in some cases, the answer will be "both," in many other cases we (education and medical professionals, and of course parents, too) need to be careful that we are differentiating between gifted traits and true medical criteria.
Seeing the importance of this issue, SENG has launched a "Misdiagnosis Initiative" this year "to alert the pediatric healthcare community to the potential for misdiagnosis." I recently interviewed three individuals behind SENG's Misdiagnosis Initiative and wanted to share with you their important insights as well as a wealth of resources on this very important topic. Responding collectively to my questions below are Marianne Kuzujanakis, MD, MPH (SENG Director and a pediatrician with a master's degree in public health from Harvard School of Public Health, as well as a homeschool mom), Rosina Gallagher, Ph.D., NCSP (a licensed clinical psychologist, a former school psychologist, current President of the Illinois Association for Gifted Children and adjunct faculty at Aurora University), and James Webb, Ph.D., ABPP-Cl (recognized as one of the "25 most influential psychologists on gifted education," the founder of SENG, and President of Great Potential Press. Full disclosure: that is the company that published my book.)
Could you please explain what the phrase "misdiagnosis of the gifted" means?
"Misdiagnosis is an often-misrepresented term. Derived from both Old English and early Teutonic languages, the prefix "mis" can be defined as wrong or bad or simply erroneous. Misdiagnosis in the gifted thus indicates the erroneous recognition of medical diagnoses and even giftedness itself. It is important to note that misdiagnosis does not solely represent medical over-diagnosis. Gifted individuals who are misdiagnosed may be given improper medical diagnoses, they may be mistakenly overlooked for real medical conditions, and they may even be wrongly misidentified as not gifted. In all cases of misdiagnosis, the true needs of the gifted individuals are not being identified and supported."
Why does misdiagnosis happen?
"Gifted misdiagnosis is multifaceted. On the one hand, the complexities of giftedness - asynchronous development, Dabrowski's overexcitabilities, twice-exceptionality, the effects of personality and gender and societal stereotypes - are not typically addressed in the entire course of medical education. Pertinent information scarcely appears in print in the health care journals. Secondly, giftedness is not routinely seen to be of medical concern by parents and health care professionals, and instead is thought of as being solely under the umbrella of education. Sometimes an uncomfortable territorial relationship exists between the health care field and the education field, with both parties not fully acknowledging the needs and strengths of the other, nor seeing the benefits of reducing misdiagnosis through collaboration. Third, mental health diagnosis as reflected by the new DSM-5 is a mechanism susceptible to easy misinterpretation and misuse - even with the best of intentions. The subjective nature of too many diagnoses can produce erroneous and detrimental outcomes when a health care professional's time and experience are limited. Importantly, giftedness is not included as a factor in the DSM, and as a result, health care professionals do not readily recognize the interaction of mental health conditions in the presence of giftedness."
Why is misdiagnosis a concern?
"When an individual's needs are misdiagnosed, those needs are unlikely to be properly met. The behavioral expression of human experience is so vast that it is not possible to accurately compartmentalize people on the basis of a limited number of symptoms. Just as we cannot answer to all causes of fever by providing Tylenol, we cannot address all unacceptable behaviors with a single label and/or treatment. Certain conditions can mask, mimic, or accentuate symptoms. In the presence of giftedness, for example, the presentation of learning disabilities and mental health conditions may vary widely when compared with the rest of the population. Learning disabilities may be hidden and inappropriate behavior suggestive of mental health conditions such as ADHD and autism may be mimicked. In some circumstances, the disability and the giftedness are both masked. The gifted child is ultimately neglected or ignored."
What is the big picture of misdiagnosis for our nation/world? What does it mean on a grand scale?
"Gifted individuals are ideally positioned to offer our nation and the entire global community fresh new directions, creative ideas and innovation, artistic beauty, astonishing technological breakthroughs, and collaborative world leadership. Yet gifted individuals cannot fully realize their giftedness unless their diverse strengths are properly supported. The gifted individual with a learning disability and/or mental health condition who is not properly recognized and supported for both may be disillusioned and not strive towards great accomplishment. The gifted individual who is labeled with a mental health condition when one does not exist invariably fails to receive proper support for his giftedness. In the big picture, there may be countless gifted individuals who fail to pursue their gifts. Up to 20% of high school dropouts are said to be gifted students, and those of highest potential may be the most at risk. Being such extreme outliers in intelligence in a society that often emphasizes mediocrity sometimes places a huge burden of alienation upon the gifted. Being misunderstood by society and especially by just those professionals who could make a difference in a child's life - educators and health care professionals - can negatively affect lives in huge ways that may be difficult to quantify."
What (if any) research has been conducted about misdiagnosis and what does it tell us?
"In 2011, SENG undertook a voluntary parent survey that received over 3,500 responses from all over the US and many locations internationally. While this survey wasn't specifically centered on misdiagnosis, it addressed the parent/clinician relationship and looked at a number of variables including parent satisfaction and a sampling of learning disabilities and mental health diagnoses given to their gifted children. Preliminary data support a strong need to improve the doctor/parent relationship, in part by helping health care professionals become more knowledgeable and supportive of the complex needs of gifted children. The survey also reported a surprisingly higher level of diagnosed mental health issues in gifted youth than the general population. While gifted children are not immune to mental health disorders, the incidence of these disorders occurring at rates higher than the general population makes one question whether some of the excess may be a result of over-diagnosis. At the same time, the survey reported learning disabilities at a lower rate than the general population, hinting at the possibility of under-diagnosis in the gifted population."
What additional research needs have yet to be addressed?
"The opportunities for research are endless. Without a medical code on the medical records for giftedness, doing medical record-based research can often be challenging. Questions needing to be addressed include the influence of gender, socioeconomic status, cultural-linguistic diversity, and geography on the likelihood of medical misdiagnosis. Such data would allow for targeted medical education. Research is desperately needed looking at the routine practice policies of practicing clinicians, as well as the reliability of ADHD, autism, and other related guidelines in the presence of concurrent giftedness. Brain scan studies (fMRI, etc.) are beginning to become research standards, yet there still exist many questions about the accuracy and interpretability of the results - including in the gifted and 2E (twice exceptional) individuals or high-ability learners from low SES or diverse cultural and linguistic backgrounds. IQ testing may sometimes be inaccurate in the presence of a 2E condition. Better tool development to more accurately identify giftedness, mental health conditions, and learning disorders is needed. Additionally, the specific parameters that define giftedness are often argued. Research is needed to further raise objectiveness."
What is SENG doing to help educate mental health professionals, educators, and parents about misdiagnosis?
"SENG's interest in educating parents, educators, and health care professionals began very early in SENG's history when it became apparent that the needs of gifted children were routinely being overlooked and misunderstood. Several SENG Professional Advisory Committee members and Emeriti are among the authors of the very popular book, Misdiagnosis and Dual Diagnosis of Gifted Children & Adults, SENG-affiliated individuals (as well as others in the gifted field) have written on misdiagnosis, and SENG-affiliated professionals often speak at national and international levels on the topic of giftedness and gifted misdiagnosis. Dr. James Webb has given medical grand rounds on misdiagnosis, SENG released a video which incorporates gifted leaders discussing misdiagnosis, and an additional variety of free educational materials and articles are available at the SENG Misdiagnosis Initiative webpage. The founders of the SENG Misdiagnosis Initiative recently were interviewed on the popular 2E Bright Not Broken radio show. With generous donations to the SENG Misdiagnosis Initiative, SENG can pursue even more plans to educate health care professionals and support the needs of misunderstood gifted children."
What can readers of this blog do to help others understand the issues surrounding misdiagnosis?
"READ, READ, READ, plus LISTEN TO & SPEAK WITH professionals and parents who are knowledgeable about the complexities of giftedness and misdiagnosis. Attend gifted conferences such as the one SENG offers to families annually in July. Participate in online seminars about giftedness and misdiagnosis (SENG hosts monthly SENGinars on a variety of gifted topics). Participate in parent groups, such as the SENG Model Parent Groups, and also consider online support groups of gifted parents who regularly deal with issues of being misunderstood. Learn all you can about giftedness. Visit the SENG Misdiagnosis Initiative webpage. Listen to your child. Talk to your child's teachers and doctor. Understand that a gifted child's needs are properly supported only if any and all concomitant learning and mental health needs are also recognized and equally supported. NEVER STOP ASKING QUESTIONS. Frequently reassess your child's needs. Kids change over time, and needs change. Remember in the process to always recognize, honor, and support your gifted child's social and emotional needs."
What resources are available for anyone who may be interested in learning more?
"* SENG Misdiagnosis Initiative (many links in addition to information here)
* Free SENG Gifted Resource Bookmarks (JPEG viewable here)
* Free SENG Gifted Misdiagnosis brochure (also available in Spanish)
**NOTE the helpful chart on page 2 of the brochure!**
* SENG Resource Library
* SENG Misdiagnosis Video
* Dr. James Webb Grand Rounds video
* SENG Annual Conference (held in July of each year)
* Book: Misdiagnosis and Dual Diagnoses of Gifted Children and Adults
* NAGC (National Association for Gifted Children)
* Davidson Institute of Talent Development
* 2E Newsletter
* Bright Not Broken Radio Show
* Hoagies' Gifted Twice-Exceptional webpage"