Treating Psychopathology in Adults with Developmental Disabilities: Glass Half Empty or Half Full?

Abstract

Abbreviations ADHD attention-deficit hyperactivity disorder ASD autism spectrum disorder DD developmental disability DR differential reinforcement ID intellectual disability It has long been known that behaviour and emotional problems occur at high rates in people with IDs and DDs.1 It is also well established that these problems can start at an early age and persist throughout the lifespan.2,3 Behaviour and emotional problems are costly to society and may ostracize people and their caregivers, clearly a countercurrent to the present Zeitgeist of inclusion. These problems can be quite stressful and dangerous for caregivers. For these reasons, psychopathology has long been, and continues to be, one of the central issues of DDs. The 2 comprehensive reviews45 provide an accurate depiction of the present state of affairs in IDs and ASD. In the first review, Dr Johnny L Matson and colleagues4 discuss discrepancies between clinical realities and best evidence practice. My own experience converges with these observations: psychiatric diagnoses are misunderstood and behavioural technologies are underused. Why is it so? An obvious explanation for the diagnostic challenges is that self-report is of limited value in many people with DDs, who, by definition, have impaired insight and communication skills. Until new technologies are developed, caregiver observations will be at the forefront of diagnostic endeavours. Numerous rating instruments have been developed but the gold standard continues to remain elusive. As a result, fundamental issues, such as phenomenology, prevalence, comorbidity, and course of psychopathology, are not well understood. This measurement problem impacts the possibility of replicating findings, which is at the heart of scientific progress. Simply put, we do not know to what extent intellectual deficits or ASD alter the typical clinical presentation of psychiatric syndromes. In many ways, diagnostic difficulties are inherent to DDs, especially in lower-functioning people. Suboptimal use of behavioural technology is a different story. Functional assessments are not used as much as they should be. Treatment decisions are often not data-driven. We can reflect on these issues in terms of efficacy and effectiveness. Efficacious treatments are those that prove beneficial for patients in well-controlled treatment studies. Effectiveness entai Is showing that efficacious treatment can be transported from the research setting to the community where there is more variation in subject selection and treatment implementation. No serious scientist would argue against the validity of operant conditioning. It is the short-term cost and practicalities that hamper optimal use of many behavioural methods. One of the biggest challenges to applied behavioural interventionists is undoubtedly the transfer of technology in a world with increased regulations and financial constraints and high staff burnout and turnover. In the second review, Dr Peter Sturmey5 provides a synthesis of the treatment literature in DDs. The review shows that there are many publications on the topic. Conversely, it indicates that the available evidence for treatments is quite limited. Of course, a distinction must be made between ineffective or harmful treatments and those that are not currently supported by enough quality research. Most (but not all) applied researchers would agree that rigorous treatment studies entail randomization, comparison to alternative treatments, blind evaluations, standardized outcome measures, standardized doses, and a large enough sample size for meaningful analyses and generalization of results.6,7 I sadly agree that there are too few methodologically robust studies of DDs. Why is it so? An obvious observation is that only a small proportion of the population has a DD, which makes study recruitment a serious obstacle. Imagine the researcher who wants to study the safety and efficacy of an alpha agonist on hyperactivity and aggression in adults with ASD. …