IPS – Guest Article: October
October 2000’s Guest Article was originally published November 1998, in “AD/HD’98 – Cambridge: Papers and Materials from the Second European Conference for Health and Education Professionals on Attention-Deficit / Hyperactivity Disorder” (available from IPS).
WHAT I’VE LEARNED FROM 25 YEARS IN THE FIELD OF HYPERACTIVITY / ADHD
Dr Sam Goldstein
Neurology, Learning and Behavior Center, Salt Lake City, Utah
The passing of time is a uniquely personal experience. It truly feels a short time ago that I evaluated my first child referred with hyperactive symptoms and subsequently presented the case to classmates in graduate school. Yet, it has been twenty-five years. In that period of time the more our field has learned the more we have come to appreciate the complexities of human behavior and child development. ADHD truly represents this phenomenon as as it is currently one of the widest researched areas not only in childhood but increasingly in adulthood as well.
My interest in impulsive, hyperactive and inattentive qualities of human behavior arose not from my work with people but rather from my observation of the laboratory animals with whom I worked as an undergraduate and in graduate school. As any pet owner can tell you, each animal has its own unique personality. Even among the rats I worked with some seemed enthusiastic and ready to enter the maze while others appeared unmotivated and disorganized. In animals these qualities have and continue to be attributed to normal temperamental variation. Yet the last twenty-five years in the field of ADHD has resulted in similar qualities in human beings, taking a long and arduous journey. These qualities have been viewed as a function of malcontent youth, as discontinuous psychiatric phenomenon representing mental illness and today being recognized as reflecting qualities that fall on a normal continuum of human behavior.
As I complete the second edition of our textbook on ADHD, I am astounded by the explosion of literature in the field. In the last ten years my collection of articles and related research has continued to increase at an exponential rate. Anyone attempting to enter the field of ADHD today, wishing to become thoroughly knowledgeable, faces a daunting and time consuming endeavor, just to get up to speed. Literally dozens of new articles and texts are published monthly with entire journals devoted to this subject.
Not long ago as I addressed a group of parents a question was asked for the first time in hundreds of presentations I have made. “What are the five or ten most important things you have learned about ADHD?” Never shy for a response, I offered some ideas off the top of my head. Since that time, however, I have generated a list. Not surprisingly, the list was quite lengthy. I decided to not limit the list to scientific facts and proven hypotheses but to also include common sense and experiential things I have learned along my professional journey. With patience and a black magic marker, I have distilled this list into the ten most important things I have learned in twenty-five years in the field of hyperactivity/ADHD. I apply these daily. They are important to me. I hope they are helpful to you.
1. Common sense rules. Common sense is a great ally. Although some phenomenon of science may not initially make sense, I have learned to start with common sense. It is a quality and a way of thinking that we share with the families with whom we work. When all else fails, I urge parents and teachers to think about a problem in a common sense way and not be burdened by what others think or what may be right or wrong. In my diagnosis and treatment protocols, in my work with residents and interns, I too attempt to apply this rule as my initial means of evaluation. ADHD as a set of human qualities exists. It does not require the large volume of studies we have generated to prove this phenomenon, to believe it. Rather it requires the willingness to consider the data from a common sense perspective.
2. Listen to caregivers (they are usually right). The most ecologically valid means of understanding a child is to live with him. As clinicians and educators, we rarely, if ever, have that luxury, except with our children. The second most valid way is to obtain a thorough history from parents or caregivers. Although these individuals may not possess our diagnostic or clinical framework for data analysis, history is our best ally for initial case formulation and the generation of diagnostic hypotheses.
3. Life is complicated. As eminent, child psychiatrist, Dr. John Werry, has said, “biology is not destiny.” I would like to add, however, that it does affect probability. Thus, although biology may set and define the boundaries of each individual’s playing field of life, experience and the unique ways each of us thinks are a powerful phenomenon in affecting life outcome. The work of Emmy Werner and others has very powerfully demonstrated this fact. ADHD may predispose individuals to behave in certain ways, however, it does not guarantee that they will or will not turn out in certain ways as adults. Although we learn much as scientists by comparing different groups of children, as the applied behavioral analysts remind us, each individual is unique and each individual must comprise their own experiment.
4. Symptoms of ADHD are catalytic. I believe that in and of themselves symptoms of ADHD are neither good nor bad. Their value is determined by the environment we design for our children and the expectations we hold. A large literature teaches us that children with ADHD, placed in high risk environments, fare far worse into their adult years than children with ADHD who are raised in environments providing protective factors. Although yet to be scientifically demonstrated, the corollary may also be true, that symptoms of ADHD in a uniquely nurturing environment may in fact represent an asset for specific individuals. Thus, we must help families understand that ADHD may place individuals at greater risk in certain circumstances to develop problems but they are not destined to have those problems.
5. Relieving symptoms is desirous, but it may not change long-term outcome. The majority of research and clinical practice has demonstrated that we have become particularly efficient through medical and psychosocial interventions at relieving symptoms of ADHD. However, symptom relief has not been demonstrated as synonymous with affecting long-term outcome. Not a single study has been published suggesting that if children take their Ritalin they will turn out to be better adults. Yet there are well over 500 studies suggesting that if they take their Ritalin today there is a reduced likelihood their mothers and teachers will respond to them in angry, frustrated ways. Although we choose to believe that if each day of a life is better, future life outcome will be better, we have yet to demonstrate this in populations of children with ADHD. Thus, families must be helped to understand that treatments for ADHD are directed at relieving symptoms. However, factors powerful in predicting good life outcome for all children are critically important for children at risk such as those with ADHD. Such factors include strong family attachments, good educational experiences, developing appropriate social relations and locating activities in life to experience success and develop a sense of efficacy.
6. Make life interesting. Individuals with ADHD appear to struggle most when tasks are repetitive, effortful, uninteresting and not of their choosing. Their performance improves as these variables become less of a factor. Our ability to make what appear to be mundane tasks interesting or meaningful for individuals with ADHD or for that matter, something they voluntarily choose to do, improves their daily functioning.
7. Make consequences valuable. Once again, a large body of research has demonstrated that as motivation increases problems caused by symptoms of ADHD decrease. This phenomenon has even been demonstrated with the computerized tasks currently used as part of many clinicians’ ADHD evaluation. The implication of the axiom “make life interesting and payoffs valuable”, suggests that we need to work harder to better match our educational system with children experiencing ADHD. Fortunately, making life interesting and payoffs valuable is beneficial for everyone. Thus, what is good for individuals with ADHD is likely good for all children.
8. Loss is a powerful motivator. We have demonstrated that reward in the absence of negative consequences is an inefficient means of modifying and shaping the behavior of children with ADHD. Response cost, that is a give and take system in which what is earned can be lost, is suggested by a modest research literature as being the most efficient means of managing any type of consequence for children and adolescents with ADHD. We have yet to demonstrate whether this pattern can be applied effectively to adults with ADHD.
9. Sometimes the solution is worse than the illness. In our efforts to support and help children with ADHD, we appear to place our hot breath on their necks significantly more than other children. This pattern results in children with ADHD frequently complying not to earn good consequences but in a negatively reinforcing model to avoid aversive consequences. A model of negative reinforcement can be applied very effectively at an elementary school level. However, by the junior high school years parents and teachers cannot offer a sufficiently omnipresent, aversive presence to make negative reinforcement work. In our efforts to help children with ADHD we may actually further shape their behavior to work only to avoid negative consequences. What appears to work well under age ten may actually be shaping children with ADHD in a way to make the adolescent and perhaps even adult years that much more difficult.
10. Love, acceptance, respect and empathy are most important. Not long ago, a late elementary school age child with ADHD and a number of other problems responded to my question about whom he would like to be for a day with “my dad.” When I questioned his reason he explained, “you just have to know my dad – he loves me.” An increasing body of research on children’s ability to cope with adversity suggests that the emotional ties they have with parents, the quality of parental relationships, the availability of parents, their acceptance, support and ability to be proud, patient and persistent when advocating for their child are likely the best predictors of positive adult outcome for all children. This is not to suggest that parents should feel guilty if their children are struggling but rather that they understand and accept the responsibility they have for structuring their lives in ways that protect and insulate not just children with ADHD but all children.
I suspect each of you has at least four or five additional items which you have learned on your life’s journey about ADHD. I urge you to take the time to generate your own list and I welcome your observations about mine.
This Fact Sheet was authored by Sam Goldstein, Ph.D. Dr Goldstein is a member of the faculty at the University of Utah and in practice at the Neurology, Learning and Behavior Center.
Correspondence to Dr Goldstein can be addressed c/o the Neurology, Learning and Behavior Center, 230 South 500 East, Suite 100, Salt Lake City, Utah 84102, U.S.A. Tel. (801) 532-1484, Fax (801) 532-1486, e-mail: Sago@Sisna.com.
©2000 Sam Goldstein