Despite the variation in reported prevalences, it is apparent that problem behaviors are common, so it is perhaps suprising that the relationship with mental ill-health has been so little examined. There is still considerable controversy as to whether problem behaviors should be considered as a type of mental disorder at all. Some clinicians point to the fact that environmental factors can play such a strong role in determining whether or not a person challenges services (hence coining the term “challenging behavior” with the focus on the service adapting to ameliorate the challenge). Yet clearly there is strong evidence for some problem behaviors being biologically driven in some people, as seen, for example, in the behavioral phenotypes of some of the syndromes that cause ID such as Smith–Magenis syndrome, Angelman syndrome, and Prader–Willi syndrome. It seems likely that for many people with problem behaviors, both these views are over-simplistic, and an interaction between biological, psychological, social, environmental, and developmental factors are etiological to the onset and continuation or remission of problem behaviors.

Some studies suggest that problem behaviors have much in common with other types of mental ill-health. For example, one study of 651 community-based adults with ID used logistic regression analyses and found that the independant predictors for onset of problem behaviors were divorce of parents in childhood, not living with a family carer, lower ability level, and preceding life events (Smiley et al., 2007). Indeed, several studies have reported associations between life events and problem behaviors (Wigham et al., 2011), and between severity of ID and problem behaviors (Collacott et al., 1998; Emerson et al., 2001; Tyrer et al., 2006; Lowe et al., 2007). These findings are similar to other types of common mental disorders that are often triggered by life events, showing a gradient across ability levels extending not just in the ID range but into average and high intellectual ability.

Large-scale investigation of the course of problem behaviors over time has also received little attention, and in view of methodological differences and study limitations, published research shows high variations. Self-injurious behavior has been reported to remit in between 3.7% and 96% of people (Schroeder et al., 1978, 1986; Murphy et al., 1993), with Emerson et al. (2001) suggesting a 29% remission rate at eight-year follow-up, and Cooper et al. (2009a) demonstrating a 38.2% remission rate after two years. Aggression has been shown to follow a remitting–relapsing course (Cooper et al., 2009b) with a 27.7% remission after two years, and another study of a cohort over 11 years also showed that some people improved (Totsika et al., 2008). Parallels can be drawn with other types of mental ill-health, some of which can show relapsing–remitting courses, such as depressive illness and schizophrenia.

Current nosological status of problem behaviors is reflected in current classifications. Classifications should have face validity, descriptive validity whereby categories do not overlap, and predictive validity. Initially, classificatory systems merely describe the symptoms and signs within disorders; then, as evidence increases, they should gradually integrate scientific characteristics to classify disorders of structure, function, and etiology, and so become increasingly sophisticated and evidence based. Inspection of the main classifications in use today show how little progress has been made towards this goal. The International Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) (World Health Organization, 1992) classified various problem behaviors, including conduct disorder in children (which does not quite encapsulate the problem behaviors seen so commonly in people with ID), pica of infancy and childhood, and various other behaviors that seem less relevant to most people with ID (Table 20.1). The specifier, “significant impairment of behavior,” which is available on the main codes for ID, does not actually report whether this refers to adaptive behavior or maladaptive behavior, and provides no description or operational rules for its use. It is, at the time of writing, still unclear as to the extent to which problem behaviors as experienced by people with ID will be included in the International Classification of Diseases, Eleventh Edition (ICD-11), which is currently underway. The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) (American Psychiatric Association, 2013), includes a section on disruptive, impulse-control, and conduct disorders, which includes oppositional defiant disorder (which requires the presence of deliberate intent, so is less relevant to most people with ID who have problem behaviors), intermittent explosive disorder, conduct disorder (which also requires the presence of deliberate intent), pyromania, and kleptomania. The differences between the two manuals and their failures to encapsulate even a description of problem behaviors as experienced by people with ID is rather revealing in terms of how advanced existing evidence is.

There have been some studies that have gone back to the starting point and attempted to statistically analyze the relationship between mental ill-health and problem behaviors. Sixteen studies were identified by Melville (2010) as using factor analysis to identify the factors/dimensions of psychopathology that do occur in adults with ID, rather than presuming which disorders exist and how they present. This is an interesting way forward to investigate the nature of problem behaviors within the context of other psychopathology. However, several of these studies have not included problem behaviors in their datasets in view of the instruments they used, and some have not used best practice guidelines for factor analysis as described by Costello and Osborne, 2005. Only three studies were identified which have included problem behaviors as well as other types of psychopathology (Sturmey et al., 2010; Tsiouris et al., 2011; Melville et al., 2014).

With improvements in methodology over time, Melville et al.’s (2014) study is one of the more informative. They followed best practice guidelines and conducted both exploratory and confirmatory factor analysis using two discrete clinical datasets (N = 457; N = 274), to examine the relationship between problem behaviors and other psychopathology. They also reported predictive validity of the dimensions they extracted using five-year longitudinal data. Five factors/dimensions were identified and then confirmed. Problem behaviors were included in a factor/dimension, which they termed “emotion dysregulation-problem behavior” and this was distinct from the depressive factor/dimension, demonstrating descriptive validity, and that problem behaviors should not be viewed as a behavioral equivalent in depressive disorders. The identified factor/dimension had strong predictive validity in terms of severity ratings on the Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD; Roy et al., 2002), the Global Assessment of Functioning (GAF; American Psychiatric Association, 2000), the Clinical Global Impression (CGI; Guy, 1976), and the Camberwell Assessment of Need for Adults with Developmental and Intellectual Disabilities (CANDID; Xenitidis et al., 2000) rating scales. It also had strong predictive validity after five years on the HoNOS-LD, the GAF, and the CGI outcome measures. The symptom profile within emotion dysregulation-problem behavior was verbal aggression, physical aggression, mood lability, irritable mood, and self-harm. This approach to better understanding the interface between problem behaviors and other psychopathology appears promising, and may be the way forward in future to improve on current classificatory systems and clinical care and supports for people with ID.

Problem behaviors may be a representation of distress experienced by adults with ID. The distinction of the emotion dysregulation-problem behavior factor/dimension from the depressive factor/dimension does not mean people with problem behaviors do not develop depression; indeed, they may be at higher risk of it, as problem behaviors can result in stress, limitations, and restrictions to the adult’s life, which might predispose to depression.

Studies from developmental cognitive neuroscience are increasingly recognizing the importance of emotion regulation to developmental psychopathology (Gross and Thompson, 2007). However, such work is at only an early stage with regards to people with ID (McClure et al., 2009), though studies have now begun to investigate the relationship between emotional dysregulation, problem behaviors, and mental ill-health in adults with ID (Sappok et al., 2014).

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