Helping Parents Understand ADHD by Goldstein
Helping Parents Understand ADHD:
A Common Sense Approach
Sam Goldstein, Ph.D.Salt Lake City, UT
Making the diagnosis of ADHD is not synonymous with explaining the diagnosis and its ramifications to parents. In clinical practice it is not uncommon to evaluate an older child or adolescent with a chronic history of ADHD and related problems and review one, if not more, previous evaluations. Careful reading of these evaluations often reflects thorough assessment, accurate diagnosis and appropriate recommendations. The family subsequently reports many recommendations were not followed because they did not thoroughly understand the diagnoses, how the clinician arrived at the diagnoses, the immediate and long term implications of the diagnoses and the potential risks versus benefits of the interventions recommended. It is essential for clinicians to conscientiously devote time to explain diagnoses to parents, the process by which diagnoses are arrived at and the relationship between diagnoses, target problems and recommendations offered.
It is critical for parents to understand that there is a logical, scientific basis for the system we use to define, evaluate, diagnose and treat children's behavioral and emotional problems, including ADHD. Further, it is critical for parents to be provided this information in a common sense way so they may understand the logic and rationale for the treatments recommended. Unless parents are active participants in the evaluation process and leave the evaluation with a layman's understanding of their child's problems, diagnoses and recommendations, they are less likely to follow through with recommended treatment.
It is obvious then that a disposition or information giving visit with parents is essential at the conclusion of assessment. During such a visit, at a minimum, clinicians must cover these issues with parents:
An explanation as to a common ground science and ordinary logic share in regards to children's problems. I explain that children's problems either disrupt and bother adults or they do not. Disruptive problems are considered externalizing. The issue of cause is not necessarily part of the explanation. Thus the disruptive continuum is explained beginning with issues related to ADHD and proceeds to problems related to oppositional defiance and conduct disorder. Non-disruptive problems are explained as those which may not adversely impact adults near the child. Thus, a ride on a public bus next to a depressed child may not in any way disrupt the adult's ride, while being seated next to a hyperactive or conduct impaired child certainly would. I offer brief statistics concerning the comorbidity of ADHD with these other problems, explaining to parents that while we hypothesize reasons for this high co-occurrence, the majority of this research is correlational, reflecting a relationship, but not necessarily explaining cause and effect.
Based upon this model, I then explain the rationale for the types of assessment procedures we have utilized to gain a better understanding of their child and to be able to see the world through the eyes of the child. I explain why each type of data gathering procedure (questionnaires, observation, direct assessment) was necessary based upon the list of problems formulated during the intake session.
I then proceed to summarize and integrate all of the data gathered, not by providing synopses or test scores but rather by offering a typical "day in the life" of this child. I explain, based upon my clinical impressions, the extent and severity of problems the child experiences, the relationship of one problem to another, the hypothesized reasons for these problems and most importantly the impact they have upon the child.
I explain to parents that I already consider them "experts" concerning their child. With the feedback and assessment data I am now providing, they are able to take their expertise and integrate it with what we know about all children.
Finally, I explain the risks versus benefits of various treatments, the ramifications of these treatments and long as well as short term implications. I attempt to summarize what we know scientifically about various treatments for ADHD. I explain how these treatments may or may not impact other problems this child is experiencing. I also make a point of discussing the risks versus benefits of not treating certain problems. In the big picture there are times when it is best to track, follow and gather additional data about certain problems rather than immediately intervening. This is especially true when a clear understanding diagnostically of certain issues cannot be formulated based upon the immediate assessment.
In regards to ADHD, I discuss the common sense definition (Goldstein and Goldstein, 1990, 1992). I focus on issues parents are initially well aware of in regards to ADHD, including attention, impulse control and hyperactivity. More importantly, I attempt to sensitize parents to the critical role consequences, specifically motivation, plays in the daily lives of children with ADHD. I explain to parents that it is not that these children are unable to pay attention but they are inconsistent in applying their attention, especially in routine, repetitive, boring or uninteresting activities. It is critical for parents to understand that when the ADHD child's interest in the task, either because of the consequences offered or because the task is made more interesting, changes, the child's behavior and performance improves.
I attempt to help parents understand that this population of children responds to consequences in a way similar to other children but that they appear to be at a different point on the "consequences continuum" than other children. The ADHD child requires immediate, consistent, predictable and more salient reinforcers and likely punishments. I provide examples such as the fact that this child can dress quickly and without hassle on the weekend but appears unable to do so on a weekday. I explain that this is likely not the result of premeditated, manipulative behavior on the part of this child but reflects this child's need for more salient reinforcers to engage in the act of dressing. After dressing on the weekend, the payoff is play. After dressing on a school day the payoff is the right to then participate in a boring, repetitive activity-school.
As Barkley (1990) has noted, I explain to parents that these children understand a rule but often have difficulty stopping, considering the ramifications of their choices and following the rule. These children may be insensitive to punishment. They may also be insensitive to long term reinforcement. It may not internalize or change their behavior. The power of reinforcers and punishments may decay faster for these children. Finally, the one example I have had universal success with in helping parents understand the manner in which ADHD children respond to consequences in their lives is the game of Bingo. Bingo is a boring, repetitive, intrinsically uninteresting game. Yet many of us are willing to endure long hours of Bingo playing. We do so because of the consequence, the potential for great monetary reward. If the payoff for winning at Bingo was just fifty cents, very few of us would play. For the ADHD child the types of consequences necessary for completing school work and routine activities may be analogous to the types of consequences we require for playing Bingo.
I then discuss the available research concerning the impact on families raising children with ADHD. I attempt to touch on issues of greater stress, more opportunities for marital disharmony, the potential for greater parental psychopathology and the fact that it is much easier for the ADHD child to run his or her family than for the family to manage this child's behavior. I offer this information not pessimistically, but to help parents understand that as scientists and clinicians we recognize that their family may operate very differently from others. There are a number of unique, significant forces day in and day out which, even in the best circumstances, stress their family.
I conclude this meeting by reviewing the treatments I have recommended and again targeting the behaviors or problems I believe these treatments will benefit. I make certain that parents understand why I have made these treatment recommendations and how they are to be implemented. At this point I speak not so much of diagnosis but rather risk versus insulation. What kinds of things can we do to further insulate this child from additional problems and what kinds of factors increase the risk that if we do not act this child's problems will continue and likely grow. I work to empower parents to recognize that as a clinician I cannot cure or make their child's ADHD go away but that their ability to see the world through the eyes of their child, understand the forces that affect this child, accept their responsibility for supporting and managing this child's problems are critical. Finally, I end by suggesting that my interpretation of the current state of family research suggests that family variables, such as the manner in which parents lead their lives, emotionally support their children and are willing to do something about problems are critical in determining what will happen to their child over the coming years.
It is essential for clinicians to recognize that accurate diagnosis and appropriate recommendations are insufficient in and of themselves to lead to parent compliance with treatment. Parents must be helped to understand their children's problems, the need for treatments recommended and accept an active, rather than passive, role in the treatment process.
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. He has authored numerous texts, book chapters, articles and training videos dealing with a range of child development topics. 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, (801) 532-1484, FAX (801) 532-1486, e-mail:mailto:email@example.com. Web site: http://www.samgoldstein.com/.