Lucille Esralew, Ph.D.
Statewide Clinical Consultation and Training Program
Most of what we know about Posttraumatic Stress Disorder (PTSD) in the population of developmentally disabled individuals has been extrapolated from studies and descriptions of this phenomenon as found in the general population. PTSD is considered an anxiety disorder involving an individual's exposure, either as a victim or as a witness, to a traumatic event associated with perceived threat of bodily injury or death and resulting in the experience of fear or horror. Symptoms typically cluster in three areas: persistent signs of increased arousal, distressing recollections of the traumatic event, and attempts to avoid stimuli associated with the trauma (American Psychiatric Association, 1994). Typically, sufferers experience a range of symptoms which may include hypervigilance, flashbacks, nightmares, sleep disturbance, mood disorder, emotional numbing, and difficulties with concentration.
PTSD has been characterized as age and developmental level specific (McCarthy, 2001). In the general adult population, the most common symptoms reported include nightmares, trouble sleeping and jumpiness (McCarthy, 2001).Very young children are likely to display aggressive or regressive behaviors (Wilgosh, 1993). Older children are more likely to present with problems in school, display conduct problems, experience dissociation, display self-injurious behavior, and engage in substance abuse (McCarthy, 2001). However, these symptoms are non-specific and can be attributable to other psychiatric problems or environmental stressors. According to Ryan (1994), developmentally disabled adults tend to report flashbacks, nightmares, hypervigilance and other signs of increased arousal; they report distress and actively attempt to avoid reminders of the traumatic event. In the general population, exposure to trauma has been correlated with depression, substance abuse, eating disorders, personality disorder, chronic pain, somatization, greater use of medical and mental health resources, and non-compliance with treatment (Rosenberg et al., 2001).
PTSD was formally introduced as a diagnosis in DSM-III in 1980 (American Psychiatric Association, 1980). Interest in this phenomenon grew following both World Wars, and the war in Vietnam. More recently, the diagnosis has been extended to trauma associated with sexual assault, violent crimes, motor vehicle or other accidents, and natural disasters. Reports indicate that lifetime exposure to traumatic events range from 50% to 90% of the adult population, yet the incidence of PTSD is only 5-7% for men and 10% for women (Ozer & Weiss, 2004). Researchers (Russell & Shah, 2003) have estimated that approximately 25% of individuals exposed to traumatic stressors develop PTSD. This suggests that exposure to trauma is necessary but insufficient in explaining the phenomenon of PTSD.
PTSD has been conceptualized in multiple manners. As a psychological phenomenon, PTSD may develop when an individual is overwhelmed and unable to integrate traumatic experience into an existing belief system about oneself, others and the world. Trauma undermines the individual's trust in the world as a safe place, view of others as intending no harm, and perception of oneself as invulnerable to harm. Additionally, self-esteem can be lowered with the perception of oneself as incapable of adequate coping and self-protection. Consequently, the individual experiences overwhelming fear and terror that overtaxes his or her coping.
As a neurophysiological phenomenon, PTSD has been linked to disruptions in the neuroendrocrine system that controls reactions to acute stress. Heightened arousal, one of the hallmarks of PTSD, has been linked to disruption in the hypothalamic-pituitary-adrenal (HPA) axis. Researchers have also focused on the amygdala, a structure involved in emotional and fear response and the hippocampus involved in the consolidation of memory. PTSD has been associated with dysregulation of cortisol and linked to atrophy of hippocampus particularly evident in people with chronic PTSD (Ozer & Weiss, 2004).
There is no particular reason to believe that these conceptualizations are mutually exclusive. These proposed pathways to the development of PTSD are offered at different levels of explanation. State-of-the-art interventions for this disorder usually capture variations of both conceptualizations by simultaneously addressing the victim's belief system along with medical management of symptoms (Rosenberg et al., 2001). The traumatized individual is helped through psychosocial intervention to reestablish feelings of safety and trust in self, others and the environment. Concurrently, the individual is offered medication to reduce physiological arousal, lessen distress, address any accompanying mood or thought disturbance and improve sleep. For instance, SSRI's, particularly Zoloft, are widely used. Some practitioners have reported that beta blockers taken soon after exposure to a traumatic event have been useful in dampening initial arousal (Ozer & Weiss, 2004).
The Phenomenology of PTSD and related stress disorders
The phenomenon referred to as "complex PTSD" reflects the possibility that sufferers may be exposed to trauma on a recurrent or chronic basis or that someone may be exposed to multiple trauma. Complex PTSD has been associated with chronic health and behavioral disorders (Rosenberg et al., 2001). Many of our consumers live in settings where they become victims of crimes or become perpetrators. Sexual and physical assault may involve staff, family members or peers. Prolonged exposure to stress within the context of poor coping and poor supports may not lead to meeting criteria for a diagnosis of PTSD but may have long-term sequelae including affecting formation of relationships and self-precept, or negatively effects mood and behavior (McCreary, 1999).
Despite assertions by some writers that developmentally disabled individuals are overrepresented in the population of persons victimized by sexual and violent crimes (Ryan, 1994), the literature detailing PTSD in this population is sparse. Researchers haven't studied whether the protective and risk factors identified for the general population pertain to developmentally disabled adults. We do not know how intellectual level contributes to the clinical presentation of PTSD and the extent to which treatment may need to be adapted to account for intellectual and other cognitive deficits. In this regard the literature on responses by children and adolescents exposed to trauma may offer understanding by a vulnerable adult population.
Another form of abuse which may be persistent and can be damaging is referred to as "non-contact abuse;" this includes serious teasing, bullying and exposure to pornography (McCreary, 1999). This author recently evaluated a 32 year old intellectually disabled male who described being tormented in high school by peers because of his "slowness" and physical disabilities. He dropped out of school in his senior year. He experienced similar social rejection and humiliation at several work sites leading to his decision to avoid stress by disengaging from community-based activity and staying home. While this individual does not meet criteria for PTSD, his story demonstrates how a pattern of non-contact abuse can affect the quality of life by damaging self-esteem and willingness to engage in adult activity.
The diagnosis of PTSD in the population of disabled adults is complex. Intellectual and communication deficits may interfere with the individual's capacity to give a coherent and reliable narrative disclosing trauma experience. Since PTSD is usually diagnosed on the basis of self-report, the burden falls upon others to recognize significant departures from baseline behavior which may signal traumatic response, particularly in individuals who are non-verbal or minimally verbal. As a community psychologist, this author can testify to the limited social histories and sparse details that follow consumers into the community. When individuals with developmental disabilities have had multiple residential placements involving multiple caregivers, institutionalization, or hospitalizations, it is likely that distal events pertaining to trauma exposure may be unreported or relevant information about such events lost. Moreover, the non-specificity of reported and observed symptoms can be confusing. Although hypervigilance, increased anxiety, and behavioral problems including aggressive behavior towards people and property have all been linked to traumatic response, these symptoms can also be associated with a variety of non-traumatically engendered mood and thinking problems (Ryan, 1994; Russell & Shah, 2003).
Do developmentally disabled and non-developmentally disabled adults view the same types of experiences as traumatic or extremely stressful? Mitchell and Clegg (2005) suggest that abuse, parental bereavement, and removal of children are among common events that constitute trauma among learning disabled adults. Furthermore, Mitchell and Clegg (2005) report that physical abuse is a more widespread phenomenon than sexual trauma among developmentally disabled adults. Researchers have not systematically studied what effect such personal characteristics as history of prior trauma, family history of psychopathology, pre-existing mental health diagnoses, and the unique meaning of the trauma have on the expression of this disorder.
Some individuals are exposed to discrete episodes of trauma related to an accident, a natural catastrophe, or sexual assault; while others are exposed to chronic and pervasive stressors. The former scenario involves a marked disruption from pre-traumatic life whereas the latter scenario involves stressors which may be embedded in the consumer's lifestyle. Despite encountering individuals diagnosable with PTSD, this author has commonly encountered individuals who are exposed to pervasive mistreatment and mishandling that has shaped their personal style, emotional response, behaviors, and capacity to empathize and relate to others. What is the impact upon people with developmental disabilities living in neighborhoods where street crime is commonplace, living in households characterized by domestic violence or living in institutions where they have either experienced or witnessed peer abuse or staff mishandling?
An individual may be misdiagnosed when symptoms of extreme stress reaction are mistaken for "behavioral problems." Flashbacks may be mistaken for hallucinations. Emotional numbing, a common trauma response, may be confused with depression, lack of motivation or confused with the negative symptoms of psychosis. Rosenberg and colleagues (2001) indicated that the most frequent diagnoses preceding PTSD were either no diagnosis or schizophrenia. Other candidates for misdiagnosis include autism and Intermittent Explosive Disorder (IED). Co-occurring diagnoses are likely to include depression, generalized anxiety, and pathological grief (McCarthy, 2001).
The author was debriefed about a 22 year old female with moderate intellectual disability and no known previous psychiatric history who was brought to the hospital for admission after witnessing the death from heart attack of her caretaker-grandmother. She had stayed beside her dead grandmother's body for several days. When she was found, she was behaving erratically, confused and appeared emotionally numbed. She had been too frightened to call her family to inform them because she was worried that she had done something to cause her grandmother's death. Was this an instance of complicated grieving or acute stress disorder?
Inappropriate sexual behavior, which may reflect poor social skills and inadequate sexual knowledge, may be mistaken for sexual abuse or psychopathology (McCreary, 1999). While working as a psychologist in a developmental center, this author spent numerous hours investigating allegations of rape reported by female consumers who were angry with their male partners for not producing cigarettes or other promised items in exchange for sexual favors.
Rosenberg and colleagues (2001), in an article about people with mentally illness, claim that having a psychiatric illness elevates the risk of developing PTSD. Ryan (1999) argues that people with developmental disabilities are more vulnerable to abuse and therefore more likely to develop PTSD. Does being dually diagnosed further elevate the risk of exposure to trauma and developing PTSD?
Not much is known about the response of adults with developmental disabilities to natural catastrophe or other disasters. When natural phenomena such as hurricanes, earthquakes, fires occur the response of developmentally disabled adults has not been separately studied; though PTSD in relation to reports of responses of adults with developmental disabilities in New Jersey to the 9/11 terrorist attacks has been considered (Esralew, 2002).
The possibility that there may be a significant time delay between exposure to a traumatic event and the manifestation of symptoms further complicates diagnosis (McCarthy, 2001). Rosenberg and colleagues (2001) noted that clinicians need to assess trauma history in a systematic manner in order to be alert to possible traumatic reactions. McCarthy (2001) reports that it is common for vulnerable individuals to delay getting needed supports because seeking such support is considered shameful and anxiety-producing. She makes the point that early childhood adversity and the development of depression in the months following exposure to the trauma place individuals at higher risk to develop PTSD.
Individuals who are exposed to traumatic events may not meet clinical criteria for diagnosis of PTSD but may demonstrate extreme reactions such as exacerbation of pre-existing psychiatric illness (Rosenberg et. al., 2001). Several years ago this author conducted a neuropsychological evaluation of a then-32 year old learning disabled male who had been "jumped" by a gang of adolescents and hit on the back of his head with a blunt object resulting in a head injury one week prior to his scheduled graduation from high school. This young man had a pre-trauma history of mental health problems including obsessive compulsive tendencies and possible prodromal tendencies towards schizophrenia. In the 11 years since his trauma exposure he has been variously diagnosed with Pervasive Developmental Disorder (PDD), schizophrenia, schizoaffective disorder, Obsessive Compulsive Disorder (OCD) and major depression. His overwhelming anxiety has brought him to the point the he cannot work and he cannot sustain attendance in a day program. Although he does not meet criteria for PTSD, the neuropsychiatric sequelae of his trauma either exacerbated or accelerated his decompensation to the point that he has not resumed baseline, pre-trauma functioning and lifestyle.
Case Study 1. Sam is a 43 year old male who carries pre-existing diagnoses of PDD and OCD. He reports receiving corporeal punishment during the time he lived with his father. He is highly anxious and stress sensitive. He has inappropriately touched female consumers at his work site and demonstrates generally poor impulse control including stealing from others and angry and aggressive verbalization. He has, on occasion, become physically aggressive. The mere mention of his father sends him into paroxysms of angry agitation manifest by intense rocking and loud assertions of, "I hate my father!" His breathing becomes more labored and he assumes a distant look that appears to reflect an altered attentional focus; one is led to the conclusion that at that point he is thinking about troubling events that occurred at a different place and time.
This author's work with Sam includes teaching him to recognize and handle stress. This involves educating him about his stress triggers and teaching him to self-monitor his unique stress response. We work together to establish "safe zones" (i.e. a person he can talk to, a place he can go, what he can think about and do) in order to regain his personal equilibrium. He becomes confused about "good" and "bad" touch. His support staff needs training to recognize signs of his increased agitation. He is concrete in his thinking and rule-bound; he will respect reasonable limits. The provision of structure and the maintenance of daily routine help him handle his overwhelming anxiety.
Case Study 2: Carl is a 50 year old male with neurological impairments who functions within the Borderline range of intelligence. He reports that he was sexually abused by both his older brother and uncle throughout adolescence. He has one documented instance of molesting an underage relative. He is continuously sexually preoccupied and maintains a childlike sense of entitlement regarding his right to gratification regardless of the impact of his behavior upon others. He appears to be less interested in reciprocal relationships than in using others as the means towards his gratification. Clinically, his prognosis is less favorable than Sam's prognosis. He tends to minimize and dismiss his own culpability as a perpetrator. The chronicity of his abuse has resulted in a distorted self-concept and view of others. It is not clear whether or not his sexual obsession is a form of paraphilia. Nonetheless, a history of misuse and mishandling at an early age has left him with poor boundaries and limited sexual knowledge. His exposure to pornography (which he actively seeks) is linked to an increase in his impulsivity, affects his language use, and is likely to lead to his placing obscene phone calls or approaching staff with lewd suggestions. He appears to become flooded with anxiety.
Both Sam and Carl were victims of abuse involving close family members. What impact does this exposure to interpersonal trauma have on their ability to form close bonds with others? Work with Carl takes the form of correcting distortions in his sexual knowledge, promoting appropriate social skills and safe interactions with others, and work with staff and family to educate them and create safe boundaries.
Clinicians need a tool which enables them to assess trauma history in a systematic manner. Information from collateral sources such as family and staff can alert clinicians and other service providers to environmental stressors, life changes and departures from baseline behavior and functioning. Some authors have suggested that a systematic trauma history be included as part of every clinical intake (Rosenberg et al., 2001).
Almost every modality and format for treatment has been used in trauma work (Mansell & Sobsey, 2001). Medical management has involved the use of SSRIs and anxiolytics to address mood disturbance, heightened arousal and to improve sleep. Diverse psychotherapeutic interventions have been utilized in trauma work including individual, group therapy, support groups, family therapy, art therapy, play therapy, drama therapy, Dialectic Behavior Therapy (DBT), exposure therapy, cognitive reframing, solutions-focused therapy, general cognitive-behavioral approaches, and behavioral management programs. Cognitive behavioral approaches have included anxiety management techniques, relaxation training, assertiveness training, desensitization, and behavioral management of environmental triggers. An examples of a comprehensive approach to treatment is presented by King and colleagues (2004).
Staff and families would benefit from training about PTSD. Consumers would benefit from assertiveness training, and curricula that increase awareness about healthy versus abusive relationships. Agencies should review their policies and programming to ensure that practices are not coercive. If staff utilize physical interventions, they need to be mindful that restraint use and hospitalization can be experienced as coercive or re-traumatizing by the consumer previously exposed to trauma (Rosenberg et. al., 2001).
McCarthy (2001) reports that the police, the judicial system and social service agencies all inadequately respond to reports of abuse. Wilgosh (1993) found that relevant services were nonexistent, scarce, difficult to access, or not geared to the needs of adults with intellectual disabilities. Early response to trauma is regarded as essential (Ozer & Weiss, 2004). For children, it appears that the supportive response of a parent, particularly a non-abusing mother, who can model good coping and favorable emotional response is predictive of better response to treatment (McCarthy, 2001). McCarthy (2001) advocates co-facilitation of treatment by a Disabilities expert coupled with an expert in trauma. The trauma victim needs social support and needs to re-establish a sense of physical and emotional safety. Persons with developmental disabilities can be taught how to recognize abusive treatment and how to effectively self-advocate by appropriately disclosing mistreatment. Persons with developmental disabilities can also be taught about healthy relationships including the healthy expression of sexuality. Family and professional caregivers can be educated to possible signs of extreme stress reaction so that the individuals who depend upon them are referred for timely and relevant needed attention.
Discussion and Conclusions
This article has reviewed information regarding the phenomenology, diagnosis and treatment of PTSD and related stress disorders relevant to our understanding of extreme stress response in the population of individuals with developmental disabilities. Authors reviewed for this article uniformly agreed that PTSD is under-recognized, under-reported and under-treated in this population. However, our population of interest is vulnerable to a range of extreme stress disorders by virtue of their dependency and their limited coping resources. We need the tools with which to identify and treat a broad range of stress reactions ranging from acute stress disorder or PTSD to sub-clinical presentations by individuals who require our clinical attention because they are distressed and their lifestyle and adaptive functioning are disrupted.
Future research should be aimed at more fully describing the phenomenon of extreme stress disorders in this subpopulation. There are many unanswered questions. What constitutes trauma? Does intellectual disability affect response to trauma? Does intellectual disability impact upon response to intervention? Can we develop a tool to adequately assess trauma history? Are there events that are so horrific that exposure to them would almost universally result in extreme stress reactions? What are the risks or protective factors associated with this clinical syndrome? Can we develop evidence-based practice? Given the diversity of possible interventions, can we profile consumers who will benefit from one versus another therapeutic approach? What preventative measures can be taken to lessen the trauma risk in this population?
Effective intervention needs to be embedded within systems and settings that do not perpetuate violence, abuse, or mishandling. More must be done to educate consumers and their caregivers about healthy relationships and to identify and guard against physically, sexually, and emotionally abusive relationships. Moreover, we have all been exposed to cataclysmic events and disasters via experience or via media. Professionals should be trained to marry expertise in disabilities with trauma work and to facilitate timely access to competent, comprehensive, and relevant treatment and services for those in need.
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Lucille Esralew, Ph.D. is Program Director of Trinitas Hospital's Statewide Clinical Consultation and Training (SCCAT) based in Cranford, New Jersey. firstname.lastname@example.org Thanks to my colleagues: Jennifer Lotano, M.S. who served as a research assistant, Ayisat Shitta, M.S. and Ted Calefati M.S.W. who provided support and helpful suggestions.