Tuesday, April 9, 2013

The Misdiagnosis Initiative: An Interview with Dr. James Webb

Note: This is a cross-post from the Global #gtchat Powered by the Texas Association for the Gifted and Talented blog. As moderator of #gtchat, this interview was conducted to raise awareness of the issue of misdiagnosis.

Dr. Webb, thank you for taking the time to talk to us about this important issue to the gifted community. Parents and educators of gifted and twice-exceptional children have long struggled with the consequences of misdiagnosis and how to approach their health care professionals about the matter.

Moderator:   What is The Misdiagnosis Initiative and why did SENG decide to promote it at this time?

Dr. Webb:   The Misdiagnosis Initiative is SENG’s latest effort to make parents and professionals aware of the possibility that gifted children and adults may be misdiagnosed as having ADHD, Asperger’s OCD, Oppositional Defiant Disorder, Bipolar, or other behavioral disorders, and that many of them may be placed inappropriately on medication. Additionally, SENG is raising awareness concerning twice-exceptional gifted children—i.e., those who are gifted yet do, in fact, have a disorder. In these cases, it is usually the person’s disability that is emphasized, and the gifted aspects are too often overlooked.

In addition to informing parents, SENG is making concerted efforts to reach health-care professions, such as pediatricians, family practitioners, psychiatrists, psychologists, clinical social workers, etc., because extremely few of these professionals have received any training about the characteristics of gifted children and adults and how these characteristics can result in behaviors that are mistaken for disorders or that have implications for disorders.

SENG’s Misdiagnosis Initiative, which really has been going on for several years, has several components:

·         Producing a brochure titled “Decreasing Medical Misdiagnosis in Gifted Children,” available from SENG both in English and in Spanish to give to health-care professionals. This brochure is available in print or as a free Internet download from SENG and nearly 10,000 copies have been distributed.
·         Producing bookmarks for parents of gifted children, available free from SENG, that list Internet and book resources. To date, over 30,000 have been distributed.
·         Featuring a brief video now on YouTube, developed a few years ago by SENG, on misdiagnosis and dual diagnoses of gifted children that has been viewed over 28,000 times.
·         Highlighting a video of a Grand Rounds lecture on misdiagnosis and dual diagnoses that I did at the University of Wisconsin Medical School that has been watched over 7,800 times.
·         Drawing attention to the book Misdiagnosis and Dual Diagnoses of Gifted Children and Adults, which has sold over 35,000 copies.
·         Conducting Continuing Education classes on this topic for psychologists and other counseling and health care professionals.
·         Establishing communication with the American Academy of Pediatrics to encourage them to incorporate characteristics of gifted children into their diagnostic guidelines for disorders such as ADHD.
·         Writing, and encouraging others to write, articles in general media as well as for professional publications in order to bring attention to this neglected area.
·         Conducting a nationwide survey of parents of gifted children to ascertain their experiences with physicians who see their gifted children.

Although these activities may seem like a lot, they do not come close to accomplishing the task and are really just the beginning. We continue to hear horror stories of gifted children who are overlooked, neglected, misunderstood, misdiagnosed, and inappropriately treated. Because of this, SENG is actively seeking funding from various foundations to continue and expand the Misdiagnosis Initiative. 

Moderator:   Last year, SENG sent a letter to the American Academy of Pediatrics questioning why their diagnostic guidelines fail to mention the possibility that a child’s intellectual giftedness may contribute to symptoms similar to ADHD. What was their response?

Dr.Webb:   When the American Academy of Pediatrics lowered the recommended age for diagnosing ADD/ADHD from age 6 to age 4, it caught our attention, particularly since there was no mention of the need to consider gifted child behaviors. In November 2011, we wrote a letter to the American Academy of Pediatrics, and follow up contact was made primarily by Marianne Kuzujanakis, M.D., MPH, who is not only a Harvard trained pediatrician, but also a SENG Board member and parent of a highly gifted child. (See her article at the Huffington Post here.) At the time, I frankly thought that despite her credentials the American Academy of Pediatrics would brush us aside. I am happy to say that they did not. What is emerging is a continuing dialogue with AAP about how SENG might help to inform pediatricians about issues regarding gifted children. This dialogue has also resulted in several publications on the topic in pediatric journals, and we are optimistic that this increased attention will continue.

We are also hoping to have similar dialogues with the American Psychiatric Association. However, we have delayed this partly because we are such a small group attempting a very large task, and also because we are awaiting the arrival of DSM-5 to see what changes have been made and the implications those changes will have for the issues of misdiagnosis and dual diagnoses of gifted children and adults. 

Moderator:   Mental disorders are generally diagnosed solely on the basis of observable behaviors reported by parents, teachers, school counselors, etc. Are pediatricians the best personnel to diagnose ADHD/ADD and other disorders often confused with gifted behavior; especially in young children? Who would be a better alternative for parents of gifted children to seek out for a diagnosis?

Dr. Webb:   Psychologists, in my experience, are generally the best at making an accurate diagnosis of ADD/ADHD—particularly if they are neuropsychologists who are also knowledgeable about gifted children. Regrettably, there are not a lot of these professionals around the country. The next best will be pediatricians, if for no other reason than that they often have a very long standing relationship with the child and the child’s family. It is important, however, for parents to appreciate how difficult it can be for a pediatrician to make such a diagnosis; the typical office visit is often only 15 to 20 minutes, and the physician must rely on short child observation and rating scale information provided by teachers or parents. Parents must recognize, too, that these brief rating scales were not developed for gifted children.

Whether you seek help from a physician or a psychologist, it is particularly important to find someone who will not see gifted behaviors as necessarily representing behavioral disorders. Parents should openly ask the psychologist or physician about prior knowledge and experience with gifted children or adults, and perhaps about SENG’s Misdiagnosis Initiative. Giving the professional a copy of SENG’s brochure can help, too, or perhaps even a copy of the book, Misdiagnosis and Dual Diagnoses of Gifted Children and Adults. If you and your child have a good relationship with the treating professional, and if the professional is open to considering gifted behaviors and treats the child with intellectual respect, then you probably are in a good situation.

Moderator:   How do gifted characteristics put children at risk for misdiagnosis?

Dr.Webb:   Perhaps the biggest risk comes from the gifted child’s high level of intensity and sensitivity. However, these characteristics, often referred to as “overexcitabilities,” are not necessarily problems. Most often, the problems come because such a child is inappropriately placed in an educational system (e.g., spending large amounts of time waiting for others to catch up), or is criticized by his family members who do not understand that the behaviors are characteristics of gifted children (e.g., “Do you have to question everything?” or “You are just stubborn and strong willed!”), or the child has substantial difficulty relating to her age peers (“Why do you have to be so bossy” or “Why don't you want to play with the other children?”). When a bright, intense, and sensitive gifted child is put in such an ill-fitting and unsupportive situation, the result often are problematic behaviors. However, these behaviors are not indicators of emotional problems.  
      Some years ago, the educator May Seagoe composed a list of characteristics of gifted children. On the left side, she wrote the strength that derived from that characteristic. On the right side, she wrote potential problems that could arise from that very same characteristic. For example, a strength might be that the child acquires information quickly; a related problem area might be that the child is impatient with others who do not learn as rapidly. Or perhaps the child has high energy (a strength), but also his frustration with inactivity may lead him to interrupt others (a problem). I would be pleased to provide a chart of these if people would email me at jwebb@greatpotentialpress.com, or you can find them here
      Because of the high energy level of gifted children, ADHD is perhaps the most common misdiagnosis, and parents might find it helpful to look at how behaviors of gifted children can be similar to those of ADHD. For this, I often recommend that they look at a brief article titled “ADHD and Children Who Are Gifted”  
      ModeratorWhat practical strategies can you offer to parents who suspect their children may have been misdiagnosed? 

      Dr. Webb:   Here are some general guidelines that may help parents in their initial thinking as to whether the behaviors are gifted or behavior disorder.

·         Does the developmental history indicate early developmental milestones or precocious development?
·         Are the behavior patterns typical ones for gifted children or adults?
·         Are the problem behaviors only found in certain situations or contexts, rather than across situations?
·         Are the problematic behaviors reduced when the person is with other gifted persons or in intellectually supportive settings?
·         Are the problematic behaviors most easily explained as stemming from a gifted/creative person being in an inappropriate situation?
·         Are the behaviors ones that truly cause an impairment in personal or social functioning, or are they simply quirks or idiosyncrasies that cause little discomfort or impairment?

If you answered yes to any of these six questions, you should mention this to the diagnosing professional. You may also want to get more specific and detailed information from  a free SENG article at http://www.sengifted.org/archives/articles/misdiagnosis-and-dual-diagnosis-of-gifted-children, or from the book Misdiagnosis and Dual Diagnosis of Gifted Children and Adults. I would also encourage parents to consider getting a second opinion. Second opinions have been a valued tradition in medicine for many decades, and they are equally valid with regard to behavior problems as well.

Moderator:   What resources are available to parents of gifted children to assist them in talking to their healthcare providers?

Dr. Webb:   I encourage parents to use all of the resources that I have listed in the SENG Misdiagnosis Initiative above. Additionally, parents may wish to look at Hoagies' Gifted Education Page which provides not only highly relevant and informative articles, but also there is a list of psychologists who have been recommended by other parents. 

Moderator:   Dr. Webb, you have dedicated your professional career to help gifted children and their parents recognize misdiagnosis. What initially influenced you to pursue this path?

Dr. Webb:   We founded SENG in 1981 at the Wright State University School of Professional Psychology, after the suicide of a highly gifted teenager who had not received mental health help sufficient to alleviate his misery and depression. After his death, his parents contacted us and asked us to begin a program, and in addition to establishing parent discussion support groups, we also provided testing and counseling to families of gifted children. Soon, we began to notice a significant number of gifted children who had been diagnosed as having ADHD. As we studied them, we determined that many of these children did not have ADHD. Instead, they were bright, intense, sensitive children, most of whom were educationally misplaced and understimulated, who often were not able to relate to their age peers, and who were in power struggles with adults because they were so strong willed.

I reflected on how much training I had received in my own doctoral graduate training program in psychology. I realized that I had received only about 60 minutes worth of lecture on the subject, with the professor focusing on the Lewis Terman studies as an example of longitudinal research. I also remembered one of my professors saying to me that “In testing, once a child scores above 130, you can stop testing because it really doesn't make much difference after that” and “Bright children are far less likely to have social, emotional, and behavioral problems.” Since I was now involved in the training of clinical psychologists, I began asking other psychologists, as well as other healthcare professionals, how much training they received about gifted children and adults. I discovered that they had either received none at all, or they had received about the same as I had.

Clearly, in my mind, there was a need to educate other professionals. So, I began to give class lectures to my doctoral students, and I began writing professionally about the topic. Through SENG, I began conducting classes in continuing education for psychologists, and gradually other professionals have begun to pick up on this area.

Moderator:   We at Global #gtchat believe strongly that awareness and dissemination of information is critical to combat the misdiagnosis of gifted children and adults. There will be a special Twitter chat at #gtchat on Friday, May 10th at 7PM EDT concerning the Misdiagnosis Initiative from SENG.