Introduction

In the time since Reiss et al. (1982) discussed the impact of diagnostic overshadowing on the under-recognition of psychiatric illness in people with intellectual disabilities (ID), significant work has been done to look at the impact of the developmental level of the individual with ID on the expression of the common psychiatric illnesses. Pathological reactions to stress, trauma, and bereavement in people with ID is an area of study that has attracted relatively sparse research activity. This chapter will look at the pathological reactions that people with ID can experience following an adverse life event. Particular emphasis will be made on recent trauma- and bereavement-related research.

Stress

Stress is a state of mental or emotional strain or tension resulting from adverse or demanding circumstances (Pocket Oxford English Dictionary, 2013). Alternatively put, stress usually occurs “when we feel we have too much to do and too much on our minds, or other people are making unreasonable demands on us, or we are dealing with situations that we do not have control over” (Mind, 2014).

Anxiety and stress are part of the definition of the universal human experience, often in response to life events. Stress and anxiety are distressing emotions, consisting of both psychological and somatic manifestations and hyper-arousal, frequently accompanied by behavioral reactions. At optimal levels, psychological stress and anxiety are normal, motivational, and protective, helpful in coping with adversity (the Yerkes–Dodson law; Yerkes and Dodson, 1906).

Of course, people with ID are not immune from the experience and consequences of stress. People with ID frequently contend with a lifetime of adversity, inadequate social supports, and poor coping skills (Bradley et al., 2012). These factors contribute to increased vulnerability to stressful life events, which may trigger mental illness (Esbensen and Benson, 2006).

Life events

While the experience of adverse life events does not always result in long-term difficulties (Bonanno, 2004) within the general population, the impact of adverse or traumatic life events on mental health has been well described (Tennant, 2002). Historically, it was erroneously believed that people with ID were in some way immune to the effects of adverse or traumatic life events, based on their perceived intellectual limitations, which “protected” the individual from the realization that the life event was traumatic (Bradley et al., 2012). However, it is now generally accepted that people with ID experience more adverse life events than the general population (Hollins and Sinason, 2000), with significant mental health and behavioral sequelae (Bradley et al., 2012), and with some adverse life events, such as sexual abuse, occurring more frequently than with the general population (Turk and Browne, 1993).

It is important to distinguish a trauma reaction (that might lead to post-traumatic stress disorder (PTSD); see below) from other reactions to adverse life events, for example, acute stress reaction. In general, the study of the impact of life events on people with ID has suffered from a lack of objective measures of life events and trauma that have been specifically designed for this population (Wigham et al., 2011a), and much of the research has been based on informant accounts of the effects of adverse life events (Wigham et al., 2011a).

There have been few large-group studies into the experience of life events and its effect on mental health and well-being. Hatton and Emerson (2004), by analyzing survey data, found that children with ID experience more frequent and a wider range of negative life events than children without a disability, and that the experiences are associated with the development of emotional, psychiatric, and conduct disorders. There is evidence that the effects of some life events appear to be cumulative. Correlation data on life events and psychiatric symptoms with a large sample of adults with ID (N = 1155) were carried out by Hastings et al. (2004). Affective disorder was predicted by chronological age, type of residence, and exposure to one or more life events in the previous 12 months. Younger adults and people living in residential institutions were at increased risk. Common life events included moving residence (16%), serious illness of a close relative or friend (9%), and serious problems with a close friend, neighbor, or relative (9%).

This research was extended by Owen et al. (2004) who reported on a population of adults in a long stay residential institution. The participants had frequently been exposed to three or four life events in the previous 12 months. Life-event exposure was associated with aggressive/destructive behavior and an increased risk of affective/neurotic disorder. Males were exposed to more frequent life events than females, as were participants with relatively high levels of adaptive behaviors. Common events experienced included change of staff in the residence (88%), minor physical illness (37%), and the inclusion of a new resident (36%).

Specifically looking at the correlation of behavioral problems with the experience of life events, a large survey-based study (N = 624) by Hamilton et al., (2005) demonstrated predictive variables including severe ID, mild ID with Down syndrome, cerebral palsy, and moderate ID, as well as the experience of multiple life events.

Finally, a recent longitudinal study of 68 subjects with ID identified associations between life events and affective, neurotic, and psychotic problems, and with anger and aggression (Hulbert-Williams et al., 2014).

Acute stress disorder and acute stress reaction

Acute stress disorder was introduced into Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR; American Psychiatric Association, 2000) to describe acute stress reactions that occur in the initial month after the exposure to a traumatic event and before the possibility of diagnosing PTSD, and to identify trauma survivors in the acute phase who are at high risk for PTSD (Bryant, 2011). A review of 22 studies in the general population concluded that, overall, the acute stress disorder diagnosis is sensitive in predicting PTSD, in that the majority of individuals with a diagnosis of acute stress disorder do subsequently develop PTSD (Bryant et al., 2011). In contrast, the acute stress disorder diagnosis has low specificity, whereby most people who eventually experience PTSD do not initially display acute stress disorder.

In people with ID, dissociative symptoms may be difficult to apply, particularly in people in the severe to profound range of ID: the person may be observed to be “in a daze.” Avoidance may be observed, but may be attributed by carers as oppositional behavior (Fletcher et al., 2007). Cognitive phenomena, such as depersonalization and derealization, are difficult for people with ID to describe and are, therefore, excluded. It is also noted that avoidance may also not be as prominent in people with ID, who may have limited opportunities to make and display such choices.

There is very limited evidence of research specifically looking at the diagnosis of acute stress disorder in people with ID. An interesting study carried out looking at 746 adults with ID who had experienced a crisis, found that individuals experiencing life events in the past year were more likely to visit the emergency department in response to crisis than those who had not experienced any life events (Lunsky and Elserafi, 2011). Six specific life events were associated with use of emergency departments – (i) move of house or residence; (ii) serious problems with family, friend, or caregiver; (iii) problems with police or other authority; (iv) unemployed for more than a month; (v) recent trauma or abuse; or (vi) a drug or alcohol problem (Lunsky and Elserafi, 2011).

Adjustment disorders

Several of the diagnostic criteria for adjustment disorders present challenges for the clinician treating people with ID. The first is that the stressor must be identifiable. It is imperative to understand the expected sources of stress in the lives of people with ID, and of the significance to a person with ID of “stressors” (for example, the change of a staff member) that would be considered innocuous in the lives of persons without ID (Levitas and Gilson, 2001). In general, a stressor can be anything in the life of a person with ID that is “beyond the person’s power to resolve alone” (Levitas and Gilson, 2001).

There may be a difficulty in taking a reliable account regarding the stressor, as the stressor itself may not be noted or known about by carers. It is important for the clinician to be aware of the baseline mood and functioning of the individual and to recognize the significance of the change in mood, anxiety, and function. The criteria are applicable, assuming that the clinician has sufficient understanding of the manner in which people with ID of different levels can present with anxiety and depressive symptoms (Fletcher et al., 2007). The research literature on adjustment disorders in people with ID is extremely limited. A retrospective outpatient psychiatric chart review of information in the first psychiatric diagnostic evaluation for the most recent 100 adult patients with mild ID, 100 patients with moderate, severe, or profound ID, and 100 matching non-ID patients found rates of adjustment disorder at 1% (mild ID), 2% (moderate to profound ID), and 2% non-ID (Hurley et al., 2003). However, some authors have concluded that adjustment disorder is probably underdiagnosed in the ID population (Raitasuo et al., 1999). In a study to validate the use of the Psychiatric Assessment Schedule for Adults with Developmental Disabilities (PAS-ADD) Checklist (Moss et al., 1998), 8% of psychiatric clinic attenders were diagnosed with adjustment disorder. The sample comprised of 226 individuals who were referred over a three-year period to a specialist mental health service for people with ID (Sturmey et al., 2005).

Post-traumatic stress disorder

There are no definitive boundaries between the stress associated with adverse life events and trauma; however, the experience of trauma is subjective, based upon the person’s perception (Weathers and Keane, 2007). One of the principal outcomes of psychological trauma is PTSD. This is a trauma-related chronic anxiety disorder, it is often cyclic, and can have profound impact on the general functioning of the individual. Awareness of the condition, and clinical efficacy with the general population, has improved in more recent times (Bisson and Andrew, 2007). Reflective of this, research of the condition with people with ID is growing.

Presentation and diagnosis

The prevalence of PTSD in ID is most reliably reported as 16% (Ryan, 1994). The diagnosis of PTSD in people with ID is complicated by the level of disability and it’s influence on the clinical manifestation of the trauma, as well as the issue of what constitutes an extreme traumatic stressor in the context of the ID (McCarthy, 2001; Fletcher et al., 2007).

For caregivers of people with ID, who are not in a position to independently self-report, traumatic events may not be known, reported, or recognized. In addition, it is important to be able to distinguish a trauma reaction from other possible reactions to adverse life events, such as depression, given the centrality of the trauma to the treatment of the condition. Recently, a self-report and informant-based screening tool has been developed (Wigham et al., 2011b). The Lancaster and Northgate Trauma Scales (LANTS; Wigham et al., 2011b, 2014) are made up of a 29-item self-report scale and a 43-item informant scale. The Diagnostic Manual – Intellectual Disability (DM-ID) devotes a complete chapter to PTSD (Fletcher et al., 2007), giving adaptation details of possible presentation differences and points out that evaluation of some areas may be difficult in people with verbal limitations, such as avoidance of talking about an incident, and describing feelings such as depersonalization and derealization. Looking at the re-experiencing cluster, frightening dreams without recognizable content are more likely in individuals with a lower developmental age, or with severe or profound ID (McCarthy, 2001). Avoidance can present with problems with recall; this may also appear solely as a function of the individual’s developmental age and require careful assessment. Avoidance behaviors and diminished participation may be reported as “non-compliance.” Caregivers may report that the individual isolates him or herself, or avoids physical contact (Sequeira and Hollins, 2003; Tomasulo and Razza, 2007).

The hyper-arousal cluster of symptoms in people with ID can present as agitated or acting-out behavior, including self-injurious behavior as referenced in DM-ID (Tomasulo and Razza, 2007), and are emphasized as a possible presentations for people with more severe ID and PTSD (McCarthy, 2001; Mitchell and Clegg, 2005). Behavioral acting out of traumatic experiences is more common for individuals with lower developmental age. These episodes require judicious assessment in that they can appear to be symptoms of psychosis in adults. Some cases of self-injurious behavior may be symptomatic of traumatic exposure and hyper-arousal. Finally, reduction in daily living skills as a symptom of PTSD is emphasized in DM-ID (Tomasulo and Razza, 2007) as described in research (Murphy et al., 2007).

Bereavement

Complicated grief involves the experience of certain grief-related symptoms and emotions at a time, and severity, beyond which could be considered adaptive. These symptoms include separation distress-type symptoms, such as longing and searching for the deceased; loneliness, preoccupation with thoughts of the deceased, in addition to symptoms of traumatic distress, such as feelings of disbelief, mistrust, anger, shock, detachment from others, and experiencing somatic symptoms of the deceased (Prigerson et al., 1999). In addition, the death of a close attachment figure can be directly associated with the onset of more non-specific mental health difficulties, such as depression, anxiety, and self-blame, among others (Parkes, 2006).

In the general population, prolonged grief disorder is the main complicated grief presentation described in the literature. Prolonged grief disorder is made up of symptoms of “separation distress” and “traumatic distress,” coupled with evidence of poor social and occupational performance (Prigerson et al., 2009). It is generally agreed that symptoms of separation distress are at the core of prolonged grief disorder, relating to the idea that prolonged grief is a form of an attachment difficulty resulting from separation, as originally described by Bowlby (1980). Traumatic distress symptoms represent bereavement-specific manifestations of being traumatized by the death. The proposed traumatic distress symptoms included efforts to avoid reminders of the deceased, feelings of purposelessness about the future, a sense of numbness, feeling shocked and stunned, difficulty acknowledging the death, feeling life is empty without the deceased, an altered sense of trust and security, in addition to anger over the death.

Complicated grief with intellectual disabilities

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Dementias Mental illness with intellectual disabilities and autism spectrum disorders Psychopathology of children with intellectual disabilities Offending behavior Carer and family perspectives Reflections

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