Diagnostic Challenges: Post-Traumatic Stress Disorder in People with Developmental Disabilities
Diagnostic Challenges: Post-Traumatic Stress Disorder in People with Developmental Disabilities
Traumatic events are a pervasive part of human experience and frequently cause long-lasting consequences. Frank post-traumatic stress disorder (PTSD) occurs in approximately one in four people who are exposed to a traumatic event. Individuals who have been subjected to prolonged or repeated traumas are believed to be even more likely to suffer significant post-traumatic disability.
Considerable research has confirmed that individuals having developmental disabilities are at increased risk for trauma, including physical assault, sexual assault, and emotional abuse (8). Not surprisingly, many of these individuals develop post-traumatic complications, though it is unknown whether individuals having developmental disabilities are at higher risk for developing post-traumatic complications than are individuals having other disabilities or those who have no identified disability.
The current diagnostic criteria for PTSD in the DSM IV-TR require that the individual has experienced or been exposed to an event in which death, serious injury, or a loss of physical integrity was threatened. The person must feel horror, intense fear, and/or helplessness in response to the event, and evidence of three symptom clusters must be present:
- Re-experiencing of the traumatic event,
- Avoidance of reminders of the trauma and numbing, and
- Physiological arousal.
Re-experiencing can include intrusive memories, visualization of the event, flashbacks, sensations that the event is recurring, and nightmares. Individuals also may respond to “triggers,”or stimuli that remind the person of the trauma and intensify feelings of distress. Triggers can include people, places, things, or odors associated with the event, and may be very subtle. For example, an individual may be triggered by a particular tone of voice, the sound of driving rain, or the smell of a particular food. Triggers can also be internal, such as a particular affective state (e.g., feeling confined) or a particular physical sensation. They can also include clinical practices, such as seclusion or restraint that recreate some aspect of the trauma. Such practices are described in trauma terminology as “re-traumatizing”as they tend to vividly evoke memories of the abuse and dramatically increase PTSD symptoms (3).
Symptoms of avoidance can be both active and passive. Many people will describe active efforts to suppress intrusive memories or to distract themselves by staying busy. There may be active avoidance of places or situations that remind the person of the traumatic events. At the same time, many people experience emotional numbing, feelings of detachment and alienation, and apathy that are not volitional but may be quite distressing. Interest in usual activities may be lost or the person may abandon hopes for the future. Individuals may also have amnesia for significant parts of the traumatic event or report gaps in their memories. They may dissociate or experience de-personalization, feeling that they are “outside themselves”or acting out life as if in a movie.
Physiological hyperarousal is believed to stem from permanent changes in the autonomic nervous system occurring in response to excessive stress (13). Irritability, sleep disturbance, hypervigilance, and impaired concentration are common. Exaggerated startle response, the traditional hallmark symptom of “shell shock,”may be present in response to auditory stimuli or may occur in response to almost any unexpected event (e.g., being awakened from sleep or having a change in one’s schedule).
Post-traumatic stress disorder has been found to be present, but under-diagnosed, among individuals who have developmental disabilities. Using DSM III diagnostic criteria, which are very similar to those in the current diagnostic manual, Ryan noted that 51 of 310 consecutive consumers presenting for outpatient behavioral and mental evaluation met criteria for PTSD (12). Very often they had been previously diagnosed with schizophrenia or other psychiatric conditions.
There are probably many reasons for under-recognition of post-traumatic symptoms among people having developmental disabilities. One is the difficulty collecting information regarding trauma history. In many cases, remote history has been distilled to vague references regarding “a past history of abuse”with little or no specific information regarding the events or their impact upon the individual. Other authors have noted the importance of collateral information to the trauma history (2). However, this information is sometimes difficult or time-consuming to obtain. Further, many case managers and clinicians have not had training regarding the content and technique for obtaining a trauma history, particularly when working with someone having limited verbal communication who may need gestures, pictures, dolls, or drawing materials to describe his or her experiences. It is not uncommon to find oneself confronted with the clinical circumstance where the individual meets all other criteria for PTSD, but no clear history of trauma can be obtained.
Another impediment to the identification of post-traumatic symptoms in people having developmental disabilities is the fact that many of the existing DSM IV TR criteria require considerable self-reporting and independent introspection. Individuals having cognitive disabilities may have particular difficulties with respect to the identification of feelings, the understanding of cause and effect, or the evaluation of the “reasonable-ness”of their responses. Many individuals who do not use verbal communication may be able to convey their thoughts through non-verbal means. People having more severe cognitive disabilities, however, may simply respond in the moment and may be unable to let others know what is causing their distress. In these instances one tries to operationalize DSM IV-TR criteria so that symptoms can be evaluated as observable behaviors. A table of behaviors that may be associated with PTSD symptoms is given at the end of this article. It should be kept in mind that these behaviors are often also characteristic of other disorders or they may be a sign of distress from other causes.
The existing DSM IV-TR criteria for the diagnosis of PTSD tend to describe the symptom clusters that one sees in adults exposed to acute traumatic events. As such, they may fail to capture the clinical presentation of many individuals. Trauma that is chronic, repetitive, or has been inflicted early in life tends to produce a different spectrum of symptoms than more acute traumatic events. Individuals who have PTSD as the result of prolonged childhood trauma, for example, commonly have marked alterations in self-concept, serious difficulties in interpersonal relationships and maintaining personal boundaries, guilt and shame, and impulses for self-injury or suicide. Individuals having developmental disabilities are disproportionately affected by chronic and recurrent trauma (2, 8). Consequently, a significant percentage of people may present a different symptom profile and may not fit existing diagnostic criteria for PTSD. The concept of a spectrum of post-traumatic disorders or complex PTSD has been suggested by Judith Herman and others (6), in order to describe these varied presentations of post-traumatic sequelae.
Diagnosis of PTSD is made yet more complicated by the fact that PTSD frequently co-exists with other psychiatric disorders. Depression and other affective disorders, substance abuse disorders, and anxiety disorders are particularly common. Flashbacks may be misconstrued to be hallucinations, resulting in a diagnosis of schizophrenia. Frank psychotic symptoms, including hallucinations and disorganized behaviors, may be present in PTSD. There has been some suggestion that a subtype of PTSD, characterized by psychosis superimposed upon PTSD symptoms, should be considered (7). It has also been noted that individuals having other serious psychiatric disabilities have a very high incidence of past trauma (11).
Lastly, a diagnosis of PTSD may be missed if the person’s symptoms are misunderstood to be volitional or “manipulative.”Very often, the consumer having PTSD will be brought for evaluation due to disruptive behavior, aggression, or resistiveness (9, 11). Management of the behavior, rather than the traumatic significance of the behavior, can easily become the focus of intervention. This has particular importance with respect to treatment, as some behavioral strategies may intensify PTSD symptoms.
The following clinical examples illustrate some of these common dilemmas.
Example 1: Mr. J. is a 34 year old man having past diagnoses of autistic disorder, attention deficit disorder, schizophrenia, and severe mental retardation who resides in an intermediate care facility. He was referred for evaluation due to life-long difficulties with severe self-injurious behavior (SIB) consisting of inserting sharp objects into his nasal cavity. He had sustained a number of serious hemorrhages and had had several surgeries to cauterize vessels and repair damage to his nasal passages and sinuses. Extensive neurological and medical work-up was negative. Past records indicated that he had been removed from the family home at age 3 due to “severe abuse and neglect”though no specifics were known. He was described as a hyperkinetic, impulsive child and always had difficulties with insomnia. He never developed verbal communication, but was able to express his immediate needs by grasping staff by the arm and leading them to food or drinks that he wanted. In adolescence, he was noted to position himself at the periphery of activity, usually in a corner, where he was able to survey the entire room. His eyes were noted to dart around the room and ceiling; his affect was flat and tense. This was construed to be psychotic behavior, and he had trials of numerous antipsychotic medications with no improvement in hypervigilance, sleep, or SIB. Over a period of years, he was noted to be more withdrawn from others. He frequently crawled into the bottom of a cupboard or closet, hid under the desk in the nursing office, or stayed in bed with the covers pulled tightly over his head. At times, his need to seclude himself was so urgent that he shoved aside others in his path and injured a peer. Members of the treatment team were skeptical regarding a diagnosis of PTSD because they felt Mr. J. was “too psychotic.”Eventually, sedative and psychotropic medications were minimized, and Mr. J became more active in his residence. Staff provided quiet reassurance and support when Mr. J. appeared distressed, and learned to coach him in a number of simple relaxation techniques. He continued to have significant SIB. Non-verbal psychotherapy was recommended.
Mr. J’s situation indicates some of the ambiguity in the diagnosis of individuals having a history of trauma and severe cognitive disability. There is observable evidence of avoidant behavior and arousal, but the specifics of the trauma, its impact on Mr. J., and his current degree of re-experiencing symptoms are unlikely to ever be uncovered. The team in this instance had become accustomed to viewing Mr. J. in a particular light, and felt confused and uncomfortable with the cognitive shift that accompanied his change in diagnosis. They also did not have the resources to provide the treatment he needed and had difficulty creating a plan to address his needs. The immediate benefits of recognition of a post-traumatic component to his distress included minimization of unnecessary psychotropic medication, provision of appropriate interpersonal supports, and initiation of basic techniques for symptom management. It is hoped that he will receive psychotherapy and that a trauma-based approach may ultimately decrease SIB and improve his connection to others.
Example 2: Ms. L. is a 20 year old woman who resides in a group home and was recently released from inpatient treatment where she was diagnosed with major depression with psychotic features, borderline personality disorder, and mild mental retardation. She is a survivor of sexual abuse by 2 step-fathers from age 3 to 7, and then was physically and sexually abused by an older male cousin from age 10 to 14. She was referred for psychiatric evaluation due to persistent dysphoria, repeated episodes of running away, and resistive behaviors. Her “non-compliance”was described in several incidents in which she had been asked to get into the residence van by a male staff member. On one occasion, she bolted into the house and hid in a closet. When prompted to get out, Ms. L. was unresponsive and stared as if in a daze. On another occasion, she froze in mid-step, half in and half out of the van, and would not move further. Staff responded to her behaviors by telling her to “quit playing games”and to “grow up.”They attempted to set more limits on her behavior, and to devise behavioral contingencies. This only seemed to deepen Ms. L.’s sadness and withdrawal. With gentle questioning, Ms. L. was able to describe intrusive memories of abuse perpetrated against her in her step-fathers’trucks. She was able to identify that episodes of past abuse had often been preceded by arguments between her parents; now altercations between peers in the residence caused her tremendous anxiety and led to her attempts to leave her home. She was reassured to learn that these were effects of trauma, and she became more able to tell staff about her discomfort. Staff were also able to understand that these symptoms were not volitional, and worked with Ms. L. to anticipate and manage triggers in constructive ways. For example, Ms. L. learned to run off to another group residence down the street and to call staff to let them know she had arrived. She participated in weekly psychotherapy and was slowly weaned from psychotropic medications.
Ms. L’s situation is illustrative of complex post-traumatic symptoms that become overshadowed by the individual’s behavioral and interpersonal difficulties, and therefore may not get addressed. Also, because Ms. L. had recently received several psychiatric diagnoses, clinicians may not think to entertain the co-existence (or alternative diagnosis) of PTSD. Staff attempts to contain behaviors that stem from trauma, without attending to the underlying trauma issues, worsened her distress. Ms. L., who did not understand the source of her discomfort, lived in a state of constant bombardment by painful feelings and memories that made no sense to her. She acted in desperation to feel safer and calmer, but then found herself constantly contending with negative consequences of her impulsive actions. Once Ms. L. learned about PTSD and understood the source of these re-experiencing symptoms, she made rapid progress in modifying her response to those symptoms. After understanding PTSD, the staff were also able to help Ms. L with the root cause of her distress.
Suggestions for Clinicians
Trauma is a pervasive clinical and social issue that affects individuals having developmental disabilities at an alarming rate. Post-traumatic sequelae and PTSD often go unidentified and untreated for a variety of reasons. It is clear that we need to expand our definition of PTSD and pursue further investigation of complex PTSD. Further knowledge is needed about treatment and recovery. Social change must create an attitude of intolerance for exploitation and abuse of all types. These steps, though necessary, reflect long-term goals. Immediate steps that clinicians can take to improve their response to trauma-related issues are given below.
- Obtain a detailed trauma history. The history should apply a broad definition of trauma to include possible exposure to abuse/exploitation/neglect in the community or in residential settings, witnessing of traumatic events (e.g., restraint of peers), and medical traumatization including early surgeries or other intrusive procedures. Known and suspected trauma should be included. Obtain training in how to obtain a trauma history and learn about medical issues that are common among individuals who have a history of trauma. Families need to be approached gently and respectfully on these issues as they may experience defensiveness or have persistent guilt regarding their inability to identify or intervene in past abuse. It is helpful to explain to consumers and families that the trauma history is an important part of the clinical history due to the potential impact trauma may have on health and well-being.
- Develop a network of resources for the treatment of trauma-related concerns. This should include therapists who use verbal and non-verbal therapies, resources for cognitive-behavioral therapies, crisis resources, training resources for service providers, psycho-educational services for consumers and families, and self-help and support groups for consumers.
- Consider a diagnosis of PTSD whenever a consumer has psychiatric symptoms. This is particularly true if the person has a known history of trauma or if trauma is strongly suspected based upon history. Individuals who have been homeless, or who have resided with others having substance abuse problems are highly likely to have been exposed to traumatic events. Consider whether PTSD co-exists or complicates other psychiatric disorders that a consumer may have. Even if a clear diagnosis of PTSD cannot be made, approaching the consumer’s difficulties with the realization that traumatic exposure may have occurred can provide the treatment team with many useful ideas for intervention.
- Maximize the person’s control over his/her care. Feelings of helplessness, powerlessness, or submission often trigger PTSD symptoms because a key aspect of traumatic experience is being helpless to protect oneself from an abuser. Individuals having PTSD may be particularly alarmed when decisions are made regarding their lives without having consulted with them. It is often helpful to approach people in a style that emphasizes their power and choice in a situation. Involve people directly, as much as possible, in decision-making regarding their health habits and treatment.
- Avoid re-traumatization. Individuals having PTSD can be re-traumatized by incidents of aggression or intrusion that further kindle the PTSD process. Physical restraint of all kinds should be avoided if at all possible. Management of aggression should focus on intensive efforts to identify warning signs of escalation and to intervene proactively. Recognize that individuals may be traumatized by medical procedures that they are unable to understand. Support from familiar staff and efforts to prepare the person for a medical procedure may lessen his/her level of stress.
- Assist residential providers, consumers, and family to anticipate PTSD symptoms. Individuals and those living with them will need to be able to recognize PTSD symptoms and develop a repertoire of proactive strategies to manage dissociation and escalation. They will need to learn appropriate distraction approaches, de-escalation techniques, relaxation techniques, or “grounding”strategies that can derail the progression of PTSD symptoms. They will also need to be able to collaborate to develop safe ways for the consumer to respond to re-experiencing symptoms. For example, a consumer who left home without notice when feeling fearful was persuaded to “run away”to another residence down the street, and then call residential staff to check in.
- Be generous with praise and appreciation. Feelings of worthlessness and unworthiness often accompany PTSD. In addition, many consumers who have PTSD are painfully aware that they struggle to do many things that others accomplish effortlessly. It is very healing for individuals to hear that their efforts are appreciated. It is important to recognize partial successes and express thanks to the individual for his or her participation.
1. Brady K, Killeen T, Brewerton T, Lucerini S Comorbidity of Psychiatric Disorder and Posttraumatic Stress Disorder J Clinical Psychiatry 61(suppl. 7):22-32, 2000.
2. Calson BE Domestic Violence in Adults with Mental Retardation: Reports from Victims and Key Informants Mental Health Aspects of Developmental Disabilities Oct/Nov/Dec 1(4):102-112.
3. Doob D Female Sexual Abuse Survivors as Patients: Avoid Retraumatization Archives of Psychiatric Nursing Vol. VI (4):245-251, August 1992.
4. Hardan A and Sahl R Suicidal Behavior in Children and Adolescents with Developmental Disorders Research in Developmental Disabilities 20(4):287-296, 1999.
5. Hembree EA, Foa EB Post-traumatic Stress Disorder: Psychological Factors and Psychosocial Interventions J Clinical Psychiatry 61(supple7):33-39, 2000.
6. Herman J Trauma and Recovery Basicbooks, NY, NY 1992.
7. Lindley S, Carlson E, Sheikh J Psychotic Symptoms in Post-traumatic Stress Disorder CNS Spectrums, September 5(9):52-57, 2000.
8. Mansell S and Sobsey D Counseling People with Developmental Disabilities Who Have Been Sexually Abused NADD Press, Kingston NY, 2001.
9. Matich-Maroney J Mental Health Implications for Sexually Abused Adults with Mental Retardation: Some Clinical Research Findings Mental Health Aspects of Developmental Disabilities January/February/March 6(1):11-20, 2003.
10. McCRreary BD Thompson J Psychiatric Aspects of Sexual Abuse Involving Persons with Developmental Disabilities Can J Psychiatry, May Vol. 4:350-355, 1999.
11. Read J, Argyle N Hallucinations, Delusions, and Thought Disorder Among Adult Psychiatric Inpatients with a History of Child Abuse Psychiatric Services, November 50(11):1467-1472, 1999.
12. Ryan R Post-traumatic Stress Disorder in Persons with Developmental Disabilities. Community Mental Health Journal, 30(1):45-54, February 1994.
13. Yehuda R Biology of Posttraumatic Stress Disorder J Clinical Psychiatry 61(suppl. 7): 14-21, 2000.
Operationalizing PTSD Symptoms for People with Developmental Disabilities
- crying or screaming with no apparent cause
- refers to past in present tense
- refers to past events as if they are happening now
- refers to others by names of people from the past
repeats complaints about remote events
- awakens upset or screaming
- awakens combative
- awakens confused
- does not want to go to room or go to bed
- afraid of the dark or bedroom
- fearful or angry without apparent cause
- appears in a daze or inattentive
- attends to things that aren’t there
- unfounded allegations of abuse
- guards certain parts of the body
- assumes fetal position or defensive posture
- abrupt and unexplained fear or aggression
- cringes or withdraws
- bolts as if pursued
- fearful reaction to particular places, people, sounds, odors
- talks about past in particular situations
- withdraws, becomes silent in certain situations
- leaves certain situations, activities, or places
- will not talk about trauma
- refuses therapy appointment
- leaves room when questioned
- refuses to see people involved at time of trauma
- avoids places, people, things that are similar to trauma
- changes subject
- secludes self in room
- sits at the margin of activity
- agrees to a plan but cannot follow through
|Apathy and Anhedonia
- flat affect
- refuses usual activities
- wanders off, aimlessness
- hard to engage in recreation
|Numbing and Dissociation
- seeks out painful or uncomfortable stimuli
- glazed look or staring
- periods of unresponsiveness
|Detachment, Estrangement, Emotional Constriction
- flat affect
- does not converse or inquire about others
- does not inquire about friends or family
- disinterested in social events
- disregard for others’welfare, may push others or ignore them
- does not join in group activities
|Sense of Foreshortened Future
- verbalizes hopelessness about future
- has no future goals
- loss of ambition at school or work
- “why bother”attitude
- trouble settling down for sleep
- awakens early
|Irritability and increased anger
- trouble settling down after stimulation (positive or negative)
- angry outbursts
- impulsive physical aggression
- excessive anger in response to small irritants
- accusations of others
- intolerance of noise, crowds
- bolts or runs away
- panic symptoms
- cannot tolerate waiting
- positions self in corner, so that he or she can see the room, see the exit, see others
- scans environment continuously
- checking behaviors, looks out window, “patrols”
- worries about robbers or intruders
- mistrustful or suspicious of others
- misplaces things
- accuses others of taking belongings
- combative on awakening
- cannot tolerate to be approached from behind
- jumps to loud noise or flash of light