PTSD and its treatment in people with intellectual disabilities: A review of the literature

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Abstract

Although there is evidence to suggest that people with intellectual disabilities (ID) are likely to suffer from Post-Traumatic Stress Disorder (PTSD), reviews of the evidence base, and the potential consequences of this contention are absent. The purpose of this article is to present a comprehensive account of the literature on prevalence, assessment, and treatment of PTSD in people with ID. Some support was found for the notion that people with ID have a predisposition to the development of PTSD. Differences in comparison with the general population may consist of the expression of symptoms, and the interpretation of distressing experiences, as the manifestation of possible PTSD seems to vary with the level of ID. Since reliable and valid instruments for assessing PTSD in this population are completely lacking, there are no prevalence data on PTSD among people with ID. Nine articles involve treatment of PTSD in people with ID. Interventions reported involve those aimed to establish environmental change, the use of medication and psychological treatments (i.e., cognitive behavioral therapy, EMDR and psychodynamic based treatments). Case reports suggest positive treatment effects for various treatment methods. Development of diagnostic instruments for assessment of PTSD symptomatology in this population is required, as it could facilitate further research on its prevalence and treatment.

Introduction

Intellectual disability (ID), historically referred to as mental retardation (MR), is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills (Schalock, Luckasson, & Shogren, 2007). According to the definition of the American Association on Intellectual and Developmental Disabilities (Luckasson et al., 2002) ID originates before the age of 18.

During the past few decades there have been important developments in research aimed at assessing mental health problems in people with ID. It is now a well-known fact that psychiatric problems are not only common in this population, but their frequency seems to be approximately 2 to 4 times higher compared to the general population (Rutter et al., 1970, Eaton and Menolascino, 1982, Reiss et al., 1982, Linna et al., 1999, Dekker et al., 2002, Emerson, 2003, Einfeld et al., 2006, Cooper et al., 2007).

Although there is evidence to suggest that individuals with ID are susceptible to the full range of psychiatric disorders (Deb et al., 2001, Došen, 2007), psychiatric assessment is considered to be problematic. Impairments in receptive and expressive language make it difficult for individuals with ID to understand, and respond to, clinicians who typically rely on the person's identification and description of his or her experiences and emotional states, especially as the level of intellectual functioning declines (Fletcher et al., 1999, Rush and Frances, 2000, Fletcher et al., 2007). Moreover, the symptoms of diverse psychiatric disorders are often expressed differently in persons with ID relative to those without ID (Fletcher et al., 2007). In addition, practitioners often overlook psychopathology by attributing severe behavioral disturbances as part of the intellectual disability itself, a phenomenon termed “diagnostic overshadowing.” To this end, release of the Diagnostic Manual-Intellectual Disability in 2007 (Fletcher et al., 2007), developed in association with the American Psychiatric Association, can be considered a milestone. It is both an effort to enhance the reliability of psychiatric diagnoses in people with ID, and a recognition of the need for evidence based treatment methods for those who have an intellectual disability along with a mental disorder (Ninivaggi, 2008).

There is growing interest in understanding the psychological consequences of traumatic events and life events in people with ID (Martorell & Tsakanikos, 2008). Individuals with ID have been found to be more likely to experience traumatic events, especially sexual and physical abuse (Ryan, 1994, Mansell et al., 1998, Focht-New et al., 2008). Children with ID also report more negative life events (e.g. bereavement, move of house or residence, life-threatening illness or injury and serious problems with significant others) than children without ID (Hatton & Emerson, 2004). Although distinguishing traumatic events from life events proves to be difficult, it is suggested that the range of potentially traumatic experiences is greater in people with ID compared to those with a relatively high level of intellectual functioning (Martorell & Tsakanikos, 2008). Another finding is that children and adults with ID who have been exposed to sexual abuse are likely to experience a range of symptoms, psychopathology and behavioral difficulties (Turk & Brown, 1993; Beail and Warden, 1995, Sequeira and Hollins, 2003, Mansell et al., 1998). Previous exposure to life events has generally been found to be associated with mental ill-health (Cooper et al., 2007), and in particular the occurrence of affective disorders and aggressive or destructive behaviors (McGillivray and McCabe, 2007, Tsakanikos et al., 2007, Hastings et al., 2004, Owen et al., 2004, Hamilton et al., 2005, Levitas and Gilson, 2001). More importantly, in a prospective study by Esbensen and Benson (2006) a causal relationship between psychopathological symptoms and previous exposure to negative life events has been found. These authors also state that the effect of exposure to past negative or traumatic events may be cumulative.

In the present article the focus is on presence of Post-Traumatic Stress Disorder (PTSD) among people with ID. PTSD is a trauma-related chronic anxiety disorder based on clear operationalized criteria (American Psychiatric Association, 2000), is often cyclic and progressive which can compromise the biological, as well as the psychological, social and spiritual functioning of a person (Van der Kolk and McFarlane, 1996, Brady, 1997). Based on estimates of comprehensive studies in the United States, in the general population prevalence rates vary between 5% and 10% (Kessler, Chiu, Demler, & Waters, 2005). PTSD proves to be associated with not only the presence of other psychiatric disorders, especially major depressive disorder, agoraphobia, social phobia, but also with high rates of medical visits (Brady, 1997). Features of PTSD vary among adults, adolescents, and children. In children, feelings of intense fear, helplessness or horror that go along with exposure to the traumatic event, can take the form of disorganized or agitated behavior. Re-experiencing could take the form of repetitive play, frightening dreams without recognizable content or trauma-specific re-enactment (American Psychiatric Association, 2000). Thus, in children who have been exposed to a traumatic event, behavioral problems are a common feature.

In the development of PTSD individual characteristics such as developmental level may be of significant importance (Bowman, 1999). Developmental level has been found to have a major impact on individuals' capacity to cope with traumatic events (van der Kolk & McFarlane, 1996). In the general population high levels of intelligence seem to be associated with a greater ability to successfully avoid exposure to potentially traumatic events and their PTSD effects (Breslau, Lucia, & Alvarado, 2006). Likewise, in combat veterans, a lower level of intelligence appears associated with a greater likelihood of developing PTSD symptoms (Macklin et al., 1998). In addition, there are indications that severity of PTSD symptoms is negatively associated with level of intelligence (McNally & Shin, 1995). Accordingly, it could be argued that people with ID are more vulnerable than the general population to the disruptive effects of trauma. In addition, there are indications that early separation from parents through early institutionalization or hospital admissions, fewer previous experiences in managing negative life events, and a limited capacity for gathering social support may make people with ID more vulnerable for the development of PTSD (Tomasulo & Razza, 2007). Moreover, it has been suggested that starting to understand oneself as disabled is potentially traumatizing in itself, thereby being another factor that might contribute to an elevated risk of developing PTSD (Hollins and Sinason, 2000, Levitas and Gilson, 2001).

Although there is evidence to suggest that people with ID are likely to suffer from PTSD, reviews of the evidence base, and the possible consequences of this contention are absent. Therefore, the purpose of this paper is to present an overview of the available literature on the assessment, prevalence, and treatment of PTSD in people with ID.

Section snippets

Methods

A literature search of the literature published from 1992 to 2008 was conducted using Picarta and Pubmed Journal citations, the NADD (National Association for the Dually Diagnosed) bulletins and book chapters as well as article and book reference lists. Keywords included post-traumatic stress disorder, trauma, life events, anxiety disorders, psychiatric disorders, mental health problems, intellectual disability, mental retardation, learning disability, assessment, diagnostic instruments,

Results

A total of 18 studies was identified and reviewed in terms of i) the assessment of PTSD in people with ID, ii) prevalence of PTSD in people with ID, and iii) treatment of PTSD in people with ID.

Discussion

It has been argued that people with ID are at greater risk of suffering from the disruptive effects of trauma. The present study found support for the notion that in the general population a lower developmental level goes along with a higher PTSD risk and more serious PTSD symptoms (Macklin et al., 1998, McNally and Shin, 1995). There are indications that besides the cognitive impairments there are other factors making people with ID more vulnerable, including early institutionalization and

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