As we learn to listen to people with autism, to their families and to their friends, evidence is growing that, in certain extreme circumstances, behaviors typically explained away as newly-emerged symptoms of the person’s autism may in fact indicate something else: Post-Traumatic Stress Disorder, or PTSD.
The general public may have heard of this disorder occurring among Vietnam veterans, Bosnian civilians, or even the young witnesses to the recent spate of schoolyard shootings. In the book Trauma and Recovery (NY: Basic Books, 1992), Judith Lewis Herman, M.D., describes the origins and consequences of PTSD:
“The human response to danger is a complex, integrated system of reactions, encompassing both body and mind. Threat initially arouses the sympathetic nervous system, causing the person in danger to feel an adrenalin rush and go into a state of alert. Threat also concentrates a person’s attention on the immediate situation. In addition, threat may alter ordinary perceptions: people in danger are often able to disregard hunger, fatigue, or pain. Finally, threat evokes intense feelings of fear and anger. These changes in arousal, attention, perception, and emotion are normal, adaptive reactions. They mobilize the threatened person for strenuous action, either in battle or in flight.
Traumatic reactions occur when action is of no avail. When neither resistance nor escape is possible, the human system of self-defense becomes overwhelmed and disorganized. Each component of the ordinary response to danger, having lost its utility, tends to persist in an altered and exaggerated state long after the actual danger is over.
Traumatic events produce profound and lasting changes in physiological arousal, emotion, cognition, and memory. More-over, traumatic events may sever these normally integrated functions from one another. The trauma-tized person may experience intense emotion but without clear memory of the event, or may remember everything in detail but without emotion. Traumatic symptoms have a tendency to become disconnected from their source and to take on a life of their own.”
Among the symptoms of PTSD described by Dr. Herman are alterations in affect regulation, which may be manifested as self-injury or explosive anger; alterations in consciousness, including the unwanted reliving of experiences, either in a sudden, intrusive manner or as a preoccupation or thought that won’t go away; and alterations in a person’s sense of self or of relations with others, resulting in manifestations of helplessness, paralysis of initiative, isolation, or withdrawal.
As Dr. Herb Lovett observed, “People who have been hurt in the name of therapy may not understand their plight any differently than survivors of cult abuse or sexual abuse. A common feature of post-traumatic stress syndrome is the flashback in which a person acts as if a memory is present reality…. every time they recall their previous maltreatment, unless their panic and rage are recognized as a function of stress, they are likely to be further stigmatized as `impossible to serve.'” (p. 208, Learning to Listen, 1996).
Those who are without speech, whose ability to produce the needed words “on demand” is unreliable, or whose words are discounted, not only may be more vulnerable to what we perceive as “typical” criminal acts, but also to experiences of intense frustration, helplessness, and entrapment in “no-win” situations. An unreliable sensorimotor system — a body that does not always do what you want it to do — in combination with “treatments,” services, and living facilities which not only fail to help the person accomplish what they need to do, but make their quality of life contingent on their successful accomplishment of what someone else wishes them to do, may, however unintentionally, establish a situation of intense threat from which neither victory nor escape are perceived possible. Those families and people with autism who have reported to the Autism National Committee on trauma-type symptoms often connect them to experiences of this type of “entrapment.”
Despite fairly abundant anecdotal evidence, knowledge of the nature, prevalence, and treatment of psychological trauma in the lives of people with severe disabilities is lacking. Herman’s book suggests a possible reason. In outlining the historical roots of PTSD research, she observes that “Periods of active investigation have alternated with periods of oblivion.” (p. 7). Three forms of trauma have come to light over the past century, and “Each time, the investigation of that trauma has flourished in affiliation with a political movement.” (p. 9).
The first to come to public awareness was “hysteria,” which the late nineteenth century was briefly inclined to consider as a possible manifestation of the isolated, politically powerless lives led by most Western women (an interpretation later dismissed in favor of Freudian reductionism). The second form of trauma to be studied was “shell shock” or combat neurosis, which became an issue in England and the United States after the First World War and reached a peak after the Vietnam War. Here the political context was the growth of an antiwar movement and a re-thinking of the effects of armed combat in the modern world. The last and most recent type of trauma to achieve widespread public awareness was sexual and domestic violence, spotlighted by the feminist movement as well as modern political advocacy to secure the human rights and protection of children. Many people with disabilities and their advocates would like to add to Herman’s list a fourth category, but its recognition may well be dependent on their success in bringing political awareness of issues such as aversive “treatments” and institutional living conditions.
The personal and public recognition of trauma which occurs at the hands of another human being is difficult to achieve, Herman notes: “When traumatic events are natural disasters or `acts of God,’ those who bear witness sympathize readily with the victim. But when the traumatic events are of human design, those who bear witness are caught in the conflict between victim and perpetrator. It is morally impossible to remain neutral in this conflict. The bystander is forced to take sides.
It is very tempting to take the side of the perpetrator. All the perpetrator asks is that the bystander do nothing. He appeals to the universal desire to see, hear, and speak no evil. The victim, on the contrary, asks the bystander to share the burden of pain. The victim demands action, engagement, and remembering. …
In order to escape accountability for his crimes, the perpetrator does everything in his power to promote forgetting. Secrecy and silence are the perpetrator’s first line of defense. If secrecy fails, the perpetrator attacks the credibility of his victim. If he cannot silence her absolutely, he tries to make certain that no one listens. To this end, he marshals an impressive array of arguments, from the most blatant denial to the most sophisticated and elegant rational-ization….The perpetrator’s argu-ments prove irresistible when the bystander faces them in isolation. Without a supportive social environment, the bystander usually succumbs to the temptation to look the other way….” (pp. 7-8)
How much more operative might this principle be when the victim can be characterized as a person with a severe disability and problem behaviors who must experience aversive “treatments” as a “medical necessity,” and when the perpetrator seems both pleasant and reasonable? As Herman observes, those who expect a purveyor of abuse to radiate warning signals will find themselves confused: “Since he does not perceive that anything is wrong with him, he does not seek help — unless he is in trouble with the law. His most consistent feature, in both the testimony of victims and the observations of psychologists, is his apparent normality….Authoritarian, secretive, sometimes grandiose, and even paranoid, the perpetrator is nevertheless exquisitely sensitive to the realities of power and to social norms. Only rarely does he get into difficulties with the law; rather, he seeks out situations where his tyrannical behavior will be tolerated, condoned, or admired. His demeanor provides an excellent camouflage, for few people believe that extraordinary crimes can be committed by men of such conventional appearance.” (p. 75).
Nor do perpetrators of abuse have to resort to violence in order to cause trauma: “Although violence is a universal method of terror, the perpetrator may use violence infrequently, as a last resort….Fear is also increased by inconsistent and unpredictable outbursts of vio-lence and by capricious enforce-ment of petty rules.” (p. 77)
Dr. Herman finds other key elements in the development of PTSD to be “isolation, secrecy, and betrayal (which) destroy the relationships that would afford protection.” (p. 100). In the absence of relationships with caring, affirming people, the foundation of personal develop-ment is undermined.
The only way back from severe psychological trauma is through re-establishing connectedness with others: “Traumatic events destroy the sustaining bonds between individual and community. Those who have survived learn that their sense of self, of worth, of humanity, depends upon a feeling of connection to others. The solidarity of a group provides the strongest protection against terror and despair, and the strongest antidote to traumatic experience. Trauma isolates; the group recreates a sense of belonging. Trauma shames and stigmatizes; the group bears witness and affirms.” (p. 214).
It may be significant that the reestablishment of trust and connectedness to others is also the factor credited with improving the lives of people with autism who believe, or whose families believe, that certain of their symptoms originated in psychological trauma. Clearly we have much to learn as this issue begins to receive the attention it deserves.
Published in The Communicator, the newsletter of The Autism National Committee (Summer 1998)