What appears below is a response from the ZERO TO THREE Diagnostic Classification Task Force, chaired by Dr. Charles H. Zeanah, to Professor Kai von Klitzing’s article, “Should We Diagnose Babies?” posted July 11, 2017 in WAIMH Perspectives in Infant Mental Health.
We appreciate Professor von Klitzing’s article addressing the DC:0-5™: Diagnostic Classification of Mental Health and Developmental Disorders of Infancy and Early Childhood (ZERO TO THREE, 2016) in the previous issue of Perspectives. His remarks nicely summarized the major features of the recently published nosology. We completely agree that “developmentally sensitive diagnoses can help the inclusion of early childhood into our concepts of mental health; adequate diagnostic categories allow infants to be included in necessary clinical studies; and in most countries, a diagnosis is a precondition for access to mental health services.” We also acknowledge and are grateful for the constructive input from so many WAIMH members during the development of DC:0-5, including responses to online surveys, email exchanges, and formal comments and informal at presentations WAIMH Congresses. No doubt the nosology was strengthened by that input. We reviewed all comments thoroughly and made use of them as we conducted our work.
As emphasized by the title of his paper, Professor von Klitzing also reviewed a number of concerns about the wisdom and usefulness of diagnosing babies with psychiatric disorders. We understand that he is speaking not only for himself but for many WAIMH members who may share the reservations he expressed. In the spirit of critical discussion that he invites, we would like to respond to a number of interesting points he raised as a way of extending the conversation.
Professor Klitzing notes that controversy remains “within the international interdisciplinary infant mental health field (represented by more than 50 WAIMH affiliates) over whether the categorization of the mental health problems of infants by psychiatric diagnoses is adequate.” Before addressing the specific points following this general statement, we would like to state that the Diagnostic Classification Revision Task Force agrees unequivocally that the DC:0-5 is inadequate – as all nosologies must be. Our hope is that it is less inadequate than its predecessors and other available nosologies regarding the diagnosis component of the assessment. We hope that its use by practitioners and studies by investigators will clarify its inadequacies and move the field towards a more reliable, valid and useful means of identifying what we believe to be serious disturbances that too many young children experience. Ultimately, the hope is that a more effective system of classification will lead to the development of more effective treatments and a better pairing of existing evidence-based treatments with the infants, toddlers and families who would benefit from these treatments.
The Task Force believes that any diagnosis – categorical or dimensional – is inadequate to describe a child with sufficient complexity for clinical purposes. Nevertheless, parents, caregivers, and providers already categorize clinical presentations. Families functionally categorize behavioral and physical problems as something that is either developmentally typical or of concern, and then further determine whether the concern is sufficient to seek help. Providers also functionally categorize the clinical presentations as normative or requiring treatment. These dichotomies exist whether or not categorical diagnoses are used to describe the clinical presentation.
With rare exceptions, nearly everything about human bodies, emotions, behaviors, and relationships occurs on a continuum and not in categories. In physical health, as in psychiatry, the bounds of “healthy” and “unhealthy” are defined as specific points on the continuum. These points are informed by research and change as our knowledge expands. Examples in physical health include hypertension, the level of allowable lead in young children’s blood, definitions of obesity, and even the level of oxygen saturation defined as low and requiring supplemental oxygen (93% is defined as hypoxia, whereas 94% is acceptable). Similarly, nearly everything about the human experience of disease involves transactional processes among children’s biology, relationships, physical and social environment, and the cultural values, beliefs, and practices of the family in the context of their community. No categorical diagnosis alone can fully reflect those characteristics. For example, for a child with recurrent bronchospasms causing difficulty breathing, identification of the categorical diagnosis of asthma is only one step in the clinical process. Specific pharmacotherapy may be recommended, but a sustained healthy state may only be attained if the child’s surrounding is cleared of triggers like parental tobacco smoking, neighborhood toxic substances, and environmental pollutants, a process that requires substantial attention to other contextual issues such as the parent-child relationship, parental depression, and family access to financial and other resources that may affect adherence to treatment recommendations.
It is precisely because of the complex interactions among multiple aspects of a child’s life that we elected to retain five axes in DC:0-5, facilitating a clinical formulation that puts these pieces together, identifies relations among the 5-axial characterization of the child and his/her environment, and focuses on those aspects of the family system that seem most modifiable. In the specific case of asthma, for example, it may be that parental addiction to nicotine and the parent’s underlying depression have the highest priority in the effective treatment of the child’s asthma. In a child with hyperactivity, treatment with a parent-child therapy may only lead to improvement if the child’s elevated lead level is identified as a causal factor and housing conditions are addressed through lead abatement or relocation. While acknowledging the limitations of a categorical diagnostic system, we believe that considering all five axes of DC:0-5 should facilitate rather than preclude attention to the dynamic processes that affect a child’s emotions and behaviors.
One objection raised by Professor Klitzing is that some clinicians believe that “the mental organization in early childhood is still so fluid that it is inappropriate to use relatively rigid categories to describe individual characteristics.” While mental organization is responsive to unfolding developmental processes and changing circumstances, there is extensive research evidence supporting the validity of “syndromes” in the early years of life. Prospective, longitudinal studies of early childhood psychopathology have shown that emotional, social, and behavioral characteristics of young children are associated with family history, risk factors, and biological differences, and these characteristics show patterns of continuity and discontinuity that are remarkably similar to those found in older children and adults. The same studies have shown that in infants and toddlers (e.g., Briggs-Gowan et al., 2006) and preschoolers (e.g., Bufferd et al., 2012) social-emotional symptoms and patterns of symptoms show persistence (that is, homotypic and heterotypic continuities) similar to those found with older children. The level of persistence is consistent with findings reported by others who have studied this phenomenon in early childhood (Fischer et al., 1984; Lavigne et al., 1998; Mathiesen & Sanson, 2000) and parallels rates of persistence documented in school-age children (Briggs-Gowan et al., 2003).
In addition, we note that except for many of the neurodevelopmental disorders, most psychiatric disorders across the lifespan do not involve an unrelenting course but wax and wane over time. This is the nature of psychopathology. In fact, diagnostic stability from the preschool years to middle childhood is moderate and comparable to stability between middle childhood and adolescence. It is true that we know little about the stability of disorders that present in the first year of life, but there is symptomatic continuity from the second year of life into the preschool and even school-age years for ratings of emotional and behavioral problems (Briggs Gowan & Carter, 2008), overactivity (Leblanc et al., 2008), aggression (Hay et al., 2014; NICHD ECCRN, 2004; Wildeboer et al., 2015), and anxiety (Hirshfeld et al., 1992). Stability is greater when these symptomatic behaviors are more severe.
As for the concern that “many clinicians and developmental researchers argue that sleep or feeding problems reported by parents in the consulting room, for example, are more an expression of troubled relationships and less individual characteristics of the infant,” we suggest that members of the Task Force should be included among those clinicians and researchers who see relationship disturbances often manifest in the form of child behavior problems. This is the reason that DC:0-5 introduced the diagnosis of Relationship Specific Disorder of Infancy/Early Childhood. We believe that it is important to distinguish between behavioral disturbances that are expressed cross contextually and those that are relationship-specific. We also encourage characterization of the child’s relational context (Axis II) for every diagnosis.
Professor Klitzing notes that “psychiatric diagnoses are associated with considerable stigma in nearly all societies” and that we run the risk of “burdening [young children] with diagnoses such as anxiety disorder, depression or autism spectrum disorder.” We argue that the stigma of mental illness is a deplorable social phenomenon that we all should endeavor to change by promoting knowledge, understanding, and empathy. It is also worth emphasizing here, as we do in the manual, that we diagnose disorders and not people. A young child has pneumonia or Separation Anxiety Disorder but is neither. For those concerned about the potential risks of diagnosing Anxiety Disorder, Depression, or Autism Spectrum Disorder (ASD), we ask them to consider the consequences of not naming the existing clinical syndrome. While words have power, there is also a powerful stigma in most cultures about the observable features of mental health problems. Children with atypical or aberrant behaviors or extremes of emotions are often labeled with words that have negative attributions, such as “bad,” “weird,” “manipulative,” or “spoiled.” Helping parents use language that offers meaning rather than blame can lead to a reduction in suffering that is already happening and can bring relief as well as a path to healthier development. In fact, clinical experience and research in the U.S. suggest that treatment engagement is higher when parents know their child’s diagnosis (Peters et al., 2005). This is one of the most effective ways of combating the destructive effects of stigmatizing those with mental illness.
Autism is a good example of the importance of making a diagnosis. Autism can be diagnosed reliably in the second year of life in most cases (Johnson & Myers, 2007; Woolfenden et al., 2012; Zwaigenbaum et al., 2016), and yet, for most afflicted children, it is diagnosed at a median age of 3 or 4 years of age in the United States (Fountain, King & Bearman, 2011). The delay between manifestations of developmental abnormalities and diagnosis is harmful because evidence suggests that earlier interventions for children with ASD are essential (Dawson et al., 2010; Schreibman et al., 2015; Zwaigenbaum et al., 2015).
Professor van Klitzing discusses the diagnosis of Attention Deficit Hyperactivity Disorder (ADHD) extensively, stating concerns that the diagnosis became studied and accepted after the pharmacologic treatment was accidentally discovered. We appreciate (and share) his skepticism about the altruism of for-profit pharmaceutical companies. It is worth noting, however, that syndromes consistent with ADHD have been described since at least the 19th century (Lange et al., 2010). We hasten to point out that the accidental discovery of the attention-enhancing effects of stimulants was identified in a residential treatment facility for children whose behaviors were too disruptive to allow them to live at home. This is clear evidence that, while the categorical description did not exist in 1938 when Charles Bradley described the effects of benzedrine, the patients he treated had problematic, high levels of hyperactivity and impulsivity that prevented engagement in developmentally typical activities (Strohl, 2011). Contemporary professional treatment recommendations for ADHD in young children have been remarkably consistent in advocating the use of non-pharmacologic treatments, usually promoting interventions that address all five DC:0-5 axes, rather than psychopharmacologic interventions (AAP, 2011; NICE, 2006; Gleason et al., 2007; Gleason et al., 2016).
Professor von Klitzing expresses concern about “a strong tendency towards expanding this diagnosis both into adulthood and into younger ages” and notes that the DC:0-5 inclusion of ADHD and Overactivity Disorder of Toddlerhood as examples of this tendency. Here again, research findings support the continuity of these conditions. An international epidemiologic literature demonstrates that the trajectories of hyperactive/impulsive behaviors are stable for toddlers, meaning 18-month-olds in the top percentiles of activity become preschool children also in the top percentiles of activity (Galera et al., 2012; LeBlanc et al., 2008; Overgaard et al., 2014). It is important to note that high level of hyperactivity alone is not a diagnostic category. Only if the hyperactivity impairs the child’s functioning does it become a disorder. The literature indicates clearly that extremes of hyperactivity are clearly present in very young children.
Professor von Klitzing notes that comorbidity is the “rule rather than the exception.” In fact, this is true, not only in early childhood but throughout the life cycle. For him and others, this highlights the “general lack of distinctive validity of psychiatric diagnostic categories.” Specifically, he asserts that “if a child is diagnosed with a comorbid pattern of, let’s say, ADHD and anxiety and/or depression, it does not mean that the poor child has two or three separate disorders.” Many co-morbid patterns are known to relate to prognosis, so we do not agree that co-morbidity is unimportant. In fact, the treatment of a child with ADHD and anxiety should be different than the treatment of a child with either alone and should attend to common underlying factors for the two disorders as well as factors specific to each.
We agree that descriptive classifications are deeply flawed, but lacking a better understanding of the neurobiology of psychiatric disorders and of their pathophysiology, a descriptive categorical system is the current state of the science.
Those who led the American Psychiatric Association Task Force on DSM-5 (APA, 2013) had planned a dimensional approach to diagnosis, but the data were not available to support it. Disappointed by this failure, the National Institute of Mental Health launched the Research Domain Criteria (RDoC) initiative which aims to change the focus of research from categorical diagnoses to dimensions of disturbance. We wholeheartedly agree with Professor von Klitzing about the ultimate promise of tying emotional and behavioral symptomatology to underlying neurobiology. Nevertheless, there is no indication that RDoCs will yield changes in clinical practice for decades. No matter what dimensional approach is used, practitioners need to make a yes/no decision about clinical caseness: either the infant/young child needs treatment or not.
We understand that WAIMH will not “promote one diagnostic system,” but we do invite the WAIMH community to participate in evaluating the value of DC:0-5. This effort needs to involve clinical usefulness as well as examinations of the validity of the diagnostic criteria and thresholds for determining diagnostic status. Such an endeavor will require multiple lines of inquiry. Our most fervent hope for DC:0-5 is that future research will refine, refute and affirm the approach that it outlines. This will require research that Professor von Klitzing is concerned may be of limited value, but at this point, we do not see dimensions and categories as an either/or clinical or research enterprise.
We appreciate Professor von Klitzing’s nuanced and thoughtful discussion of DC:0-5, and we are grateful for the opportunity to extend the dialogue about these important issues. Diagnosis of problems in babies is a challenging topic – the very term “baby” elicits images of tenderness, hopefulness and innocence. Nevertheless, our field exists precisely because we know that young children suffer distress and functional impairment as well as jeopardized development stemming from different types of psychopathology. As clinicians, we must guard against attributing to parents our own uneasiness about talking clearly and concretely about difficult topics. Instead, as a field, we need to move beyond a pro/con consideration of diagnostic approaches and endeavor to deepen our understanding of the young child in the context of his/her circumstances.
References
American Academy of Pediatrics (2011). ADHD: Clinical practice guideline for the diagnosis, evaluation, and treatment of attention-deficit/hyperactivity disorder in children and adolescents. Pediatrics, 128, www.pediatrics.org/cgi/doi/10.1542/peds.2011-2654
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, APA Press.
Briggs-Gowan, M.J., Owens, P.L., Schwab-Stone, M.E., Leventhal, J.M., Leaf, P.J. & Horwitz, S.M. (2003). Persistence of psychiatric disorders in pediatric settings. Journal of the American Academy of Child and Adolescent Psychiatry, 42, 1360-1369
Briggs-Gowan, M.J. & Carter, A.S. (2008). Social-emotional screening status in early childhood predicts elementary school outcomes. Pediatrics, 121, 957-962.
Briggs-Gowan, M.J., Carter, A.S., Bosson-Heenan, J. Guyer, A.E., and Horwitz, S.M. (2006). Are infant-toddler social-emotional and behavioral problems transient?
Journal of the American Academy of Child and Adolescent Psychiatry, 45, 849-858.
Bufferd, S.J., Dougherty, L.R., Carlson, G.A., Rose & Klein, D.N. (2012). Psychiatric disorders in preschoolers: continuity from ages 3 to 6. American Journal of Psychiatry, 169, 1157–1164.
Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125, e17-e23.
Fischer, M., Rolf, J.E., Hasazi, J.E. & Cummings, L. (1984), Follow-up of a preschool epidemiological sample: cross-age continuities and predictions of later adjustment with internalizing and externalizing dimensions of behavior. Child Development, 55, 137-150
Fountain, C., King, M.D. & Bearman, P.S. (2011). Age of diagnosis for autism: individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health, 65, 503-510.
Galera, C., Cote, S.M., Bouvard, M.P., Pingaultm, J.P., Melchior, M., Michel, G., Bolvin, M., & Tremblay, R.E. (2012). Early risk factors for hyperactivity-impulsivity and inattention trajectories from age 17 months to 8 years. Archives of General Psychiatry, 68, 1267-1275.
Gleason, M.M., Egger, H.L., Emslie, G.J., Kowatch, R.A., Lieberman, A.F, Luby, J.L., Owens, J., Scahill, L., Scheeringa, M.S., Stafford, B., Wise, B., & Zeanah, C.H. (2007), Psychopharmacological treatment for very young children: Contexts and guidelines. Journal of the American Academy of Child and Adolescent Psychiatry, 46, 1532-1572.
Gleason, M.M., et al., (2016). Addressing early childhood emotional and behavioral problems (Policy Statement). Pediatrics, 138, p. e20163025.
Hay, D.F., Waters, C.F., Perra, O., Swift, N., Kairis, V., Phillips, R., Jones, R., Goodyer, I., Harold, G., Thapar, A. and van Goozen, S. (2014). Precursors to aggression are evident by 6 months of age. Developmental Science, 17, 471–480.
Hirshfeld, D.R., Rosenbaum, J.F., Biederman, J., Bolduc, E.A., Faraone, S.V., Snidman, N., Reznick, J.S., Kagan, J. (1992). Stable behavioral inhibition and its association with anxiety disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 31, 103-111.
Johnson, C. P., & Myers, S. M. (2007); American Academy of Pediatrics Council on Children with Disabilities. Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183–1215.
Lange, K. W., S. Reichl, K. M. Lange, L. Tucha and O. Tucha (2010). The history of attention deficit hyperactivity disorder. Attention Deficit and Hyperactivity Disorders, 2, 241-255.
Leblanc, N. Boivin, M., Dionne, G., Brendgen, M., Vitaro, F., Tremblay, R.E. & Perusse, D. (2008). The development of hyperactive-impulsive behaviors during the preschool years: The predictive validity of parental assessments. Journal of Abnormal Child Psychology, 36(7), 977-987.
Lavigne J.V, Arend, R., Rosenbaum, D., Binns, H.J., Christoffel, K.K., Gibbons, R.D. (1998). Psychiatric disorders with onset in the preschool years: I. Stability of diagnoses. Journal of the American Academy of Child and Adolescent Psychiatry 37:1246-1254.
Mathiesen, K.S., Sanson, A. (2000). Dimensions of early childhood behavior problems: Stability and predictors of change from 18 to 30 months. Journal of Abnormal Child Psychology, 28, 15-31.
NICE (2016). Attention deficit hyperactivity disorder: diagnosis and management, London, UK.
NICHD Early Child Care Research Network (2004). Trajectories of physical aggression from toddlerhood to middle childhood: predictors, correlates, and outcomes. Monographs of the Society for Research in Child Development, 69(4), vii, 1-129.
Overgaard, K.R., Aase, H., Torgenson, S. Reichborn-Kjenneurd, T., Oerbeck, B., Myhre, A., Zeiner, P. (2014). Continuity in features of anxiety and attention deficit hyperactivity disorder in young preschool children. European Child and Adolescent Psychiatry, 23, 743-752.
Peters, S., Calam, R. & Harrington, R. (2005). Maternal attributions and expressed emotion as predictors of attendance at parent management training. Journal of Child Psychology and Psychiatry, 46, 436-448.
Schriebman, L., Dawson, G., Stahmer, A., Landa, R., Rogers, S., McGee, S., Kasari, C., Ingersoll, B., Kaiser, A., Bruinsma, Y., McErney, E., Wetherby, A. & Halliday, A. (2015). Naturalistic, developmental behavioral interventions: Empirically validated treatments for autism spectrum disorder. Journal of Autism and Developmental Disorders, 45, 2411-2428.
Strohl, M.P. (2011). Bradley’s benzedrine studies on children with behavioral disorders. The Yale Journal of Biology and Medicine, 84, 27-33.
Wildeboer, A., Thijssen, S., van IJzendoorn, M.H., van der Ende, J., Jaddoe, V.W.B., Verhulst, F.C., Hofman, A., White, T., Tiemeier H. & Bakermans-Kranenburg, M.J. (2015). Early childhood aggression trajectories: Associations with teacher-reported problem behavior. International Journal of Behavioral Development, 39, 221–234.
Woolfenden, S., Sarkozy, V., Ridley, G., & Williams, K. (2012). A systematic review of the diagnostic stability of autism spectrum disorder. Research in Autism Spectrum Disorders, 6, 345-354.
ZERO TO THREE (2016). DC:0-5™: Diagnostic classification of mental health and developmental disorders of infancy and early childhood. Washington, DC: Author.
Zwaigenbaum, L., Bryson, S.E., Brian, J., Smith, I.M., Roberts, W., Szatmari, P., Roncadin, C., Garon, N., Vaillancourt, T. (2016). Stability of diagnostic assessment for autism spectrum disorder between 18 and 36 months in a high-risk cohort. Autism Research, 9, 790-800.
Authors
Charles H. Zeanah1,2
Alice S. Carter1,3
Julie Cohen1,4
Helen Egger1,5
Mary Margaret Gleason1,2
Miri Keren1,6
Alicia Lieberman1,7
Kathleen Mulrooney 1,4
Cindy Oser1,4
1) ZERO TO THREE Diagnostic Classification Task Force
2) Tulane University School of Medicine
3) University of Massachusetts--Boston
4) ZERO TO THREE
5) New York University Medical Center
6) Tel Aviv University
7) University of California, San Francisco
